Hi all, Firstly I would like to apologise for not posting and keeping you up to date with how things have been.
It seems my life has turned round completely since I last posted, and all for the better too.
I have managed to go back to work and have been working since July last year. This for me was such an important part of me getting my condition under control and felt absolutely amazing to be able to do so. I still take my cocktail of tablets, although I am naughty and do not take them as I should, but this is because my life has become great again and I am not reliant on the tablets as much as I was. When I look back or read over my blog I realise how badly my condition was affecting my life and everything in it, how it had a hold of everything I did or wanted to do. Now I am glad to say I have a hold over it. Yes I have days where I am bad, but not to the extent that I was and I probably have them days a few times a month but the good thing is I am still able to go to work and manage,, yes it can be tough but the fight and determination in me overrides most things now adays as I know how bad I can be and and am extremely thankful I am not in that same place I was.
Daily I take;
Lansaprozole
Tramadol
Hydroxychloroquine
Calcichew
Gabapentin
and If I am having a bad day I will top that up with Naproxen. With the Tramadol though I have reduced this significantly. I was reliant on 8 a day to get me through previously, I am finding that I can take just 2 a day now and top up with paracetamol if and when necessary which I definitely prefer.
I have also been able to remove some of the aids I was using in my home( now in shed). I have removed my toilet frame, toilet seat and my aid that I used to help me sit in bed, this feels great to be able to do this, I still use my kettle tipper as my wrists and fingers are generally weak and can still go at anytime so this I will probably always use, but things are good and I am very happy.
I have even been offered a promotion at work, which is great news. Only problem being it's full time and more travelling. Will my body be able to do it and still be as good as it is now? Fact is I don't know and too be honest I don't think I will know unless I try will I? I don't have to give an answer until middle of Feb so I still have time to mull it over in my head. I ma also going to give the travelling a taster, check it out and see how it is, give me a rough idea. I shall keep you posted.
I think it's fair to say that I am proof that although I had some low points in my health where I was suffering terribly, unable to walk, or move without extreme pain, things can get better and improve and there is always hope,, NEVER GIVE UP, , I never did, and have always tried to stay optimistic to the best I possibly can. Look at me 2 years ago, and look at me now... Anything is possible :-)
Monday, 20 January 2014
Monday, 15 October 2012
It's getting cold brrrr
The damp and crisp mornings are now approaching and each morning when i wake i can feel myself getting stiffer and stiffer lol... I can't really complain as i have had a good run and things have been good for me but i am definitely not looking forward to winter months approaching..
Woke this morning with every joint sore and achy, am sat in bed now with fleecy pjs, fluffy socks and slipper socks on, dressing gown and the quilt tightly wrapped around me lol. I need to make sure i keep these joints warm, don't want to be letting any cold get through lol...
Its been an ok week for me. I have even taken up drawing again, which i am really chuffed about. It has iraated my wrists/elbows and fingers but to be able to draw again has really lifted my spirits, i forgotten how good it feels to be able to pen to paper and look back at my work after.. I just need to learn to pace myself with the drawing. I have a thing where if i start something i feel the urge that i need to finish it off, unfortunately now i am not able to do that so i need to rest when need be and continue again when i am rested... I am enjoying it though so i am going to continue and see what master pieces i can come up with lol.
I have got myself a little handy man at the moment. He is a 16 yr old lad who is my friends son. He is at college and loves fishing and is looking for some extra money to buy his fishing stuff. I have had him do my front and back garden, he has done a marvellous job, something i would definitely not be able to do myself. I am now looking to see what other jobs i can get him to do that i am unable to do myself. I have some decorating that needs doing, but i am not doing it before Christmas, it can wait. It is good to know that i now have someone who i can pay to do odd jobs for me. Saves me getting wound up because i cant do it lol..
Its small things that others can take for granted that makes me happy and keeps me at peace..Things i took for granted myself,, but now even i realise the importance of everything and will not take things for granted ever again.
Woke this morning with every joint sore and achy, am sat in bed now with fleecy pjs, fluffy socks and slipper socks on, dressing gown and the quilt tightly wrapped around me lol. I need to make sure i keep these joints warm, don't want to be letting any cold get through lol...
Its been an ok week for me. I have even taken up drawing again, which i am really chuffed about. It has iraated my wrists/elbows and fingers but to be able to draw again has really lifted my spirits, i forgotten how good it feels to be able to pen to paper and look back at my work after.. I just need to learn to pace myself with the drawing. I have a thing where if i start something i feel the urge that i need to finish it off, unfortunately now i am not able to do that so i need to rest when need be and continue again when i am rested... I am enjoying it though so i am going to continue and see what master pieces i can come up with lol.
I have got myself a little handy man at the moment. He is a 16 yr old lad who is my friends son. He is at college and loves fishing and is looking for some extra money to buy his fishing stuff. I have had him do my front and back garden, he has done a marvellous job, something i would definitely not be able to do myself. I am now looking to see what other jobs i can get him to do that i am unable to do myself. I have some decorating that needs doing, but i am not doing it before Christmas, it can wait. It is good to know that i now have someone who i can pay to do odd jobs for me. Saves me getting wound up because i cant do it lol..
Its small things that others can take for granted that makes me happy and keeps me at peace..Things i took for granted myself,, but now even i realise the importance of everything and will not take things for granted ever again.
Thursday, 27 September 2012
I can feel it in my bones..
The cold is on its way, i can feel it in my bones lol.
Woke this morning and my hands are more stiffer than usual, my toes have some pain when bending, my shoulders are achy and so is back..Don't get me wrong i am not in loads of pain, but uncomfortable enough to notice that this damp chilly weather is playing a part in aggravating Arther..
2 weeks ago i started doing some glossing on stairs, as sun was shining and i was feeling good, since doing that i have not been able to finish the job as my hands and wrists have not been great, and i just didn't want to aggravate my hands so that i had a full blown flare. The masking tape is still on the stairs and around door frames,, not the best sight lol. I have my new bf coming down to see me next weekend, and i wanted everything perfect, not convinced things will be perfect lol, I know i have tried, its just frustrating i cant finish.. grrr. I have pre warned him and he is fine about it. I soooo hope that next weekend when he is here that i am ok,, but then in the same breathe if i am not he will see how i can be too. My aids will still be on show as i have nothing to be ashamed of, its all part of me and my life.I know he will be ok with things,, i do have the odd niggle at the back of my head some days thinking shall i put some things away, but then the positive strong part of me leaps out and says NOOO, he likes you for you and should see things just as they are..
This morning i am having a lazy morning chilling in bed, keeping warm and resting till i feel better and more energy to get up and get doing the housework, am in no rush, i mean i have all day lol.. Am listening to my body, that's my excuse lol..
Woke this morning and my hands are more stiffer than usual, my toes have some pain when bending, my shoulders are achy and so is back..Don't get me wrong i am not in loads of pain, but uncomfortable enough to notice that this damp chilly weather is playing a part in aggravating Arther..
2 weeks ago i started doing some glossing on stairs, as sun was shining and i was feeling good, since doing that i have not been able to finish the job as my hands and wrists have not been great, and i just didn't want to aggravate my hands so that i had a full blown flare. The masking tape is still on the stairs and around door frames,, not the best sight lol. I have my new bf coming down to see me next weekend, and i wanted everything perfect, not convinced things will be perfect lol, I know i have tried, its just frustrating i cant finish.. grrr. I have pre warned him and he is fine about it. I soooo hope that next weekend when he is here that i am ok,, but then in the same breathe if i am not he will see how i can be too. My aids will still be on show as i have nothing to be ashamed of, its all part of me and my life.I know he will be ok with things,, i do have the odd niggle at the back of my head some days thinking shall i put some things away, but then the positive strong part of me leaps out and says NOOO, he likes you for you and should see things just as they are..
This morning i am having a lazy morning chilling in bed, keeping warm and resting till i feel better and more energy to get up and get doing the housework, am in no rush, i mean i have all day lol.. Am listening to my body, that's my excuse lol..
Wednesday, 26 September 2012
It's been a while
It has been a while since i wrote my blog, i apologise to those who read regularly. I have had a lot going on at home again and my focus has been elsewhere.
Good news is i have had a real great run. I have had about 6 weeks of pure bliss where my crutches were hardly used at all. Yeah i had a few bad days, but it has been sooooo nice to be able to do things with the kids and go out. I have had a trip to Nottingham with my Friend C and even had a trip to London and visited a museum. I think the warm weather has helped with the osteo in my hips, back and knees. I am feeling happy in myself, i have a lot of good and positive things going on in my life at the moment and i also believe that has helped with how i am feeling.
I have met a great guy, who knows all about my ups and downs and i made him read my blog so that he can be aware of how things are for me. That didn't phase him and he is still about lol.
Winning my esa and having my money paid correctly is also making my life so much easier and one less thing for me to worry about.
My support worker filled in my DLA forms which were sent in august 16th, am still waiting for a reply from them, they say no news is good news, but we shall see lol.
The kids are doing well at school and my daughter is in her last year, which is scary, but they both seem more settled this year and both doing extremely well.
I saw Rheumatologist last week who wants me to continue as i am with my meds and will see me again in 6 months. If in the meantime i have a flare or swelling i am to go to doctor for blood test to check for inflammation. Was only a quick chat, but because i had been ok for a while i didn't really have anything to moan about lol. Yes i still wake up stiff every morning and yes i still have to sit and take meds in morning before the pain eases and yes i still get pain everyday but things have been a lot more manageable and i am happy. Happy happy happy lol.
Good news is i have had a real great run. I have had about 6 weeks of pure bliss where my crutches were hardly used at all. Yeah i had a few bad days, but it has been sooooo nice to be able to do things with the kids and go out. I have had a trip to Nottingham with my Friend C and even had a trip to London and visited a museum. I think the warm weather has helped with the osteo in my hips, back and knees. I am feeling happy in myself, i have a lot of good and positive things going on in my life at the moment and i also believe that has helped with how i am feeling.
I have met a great guy, who knows all about my ups and downs and i made him read my blog so that he can be aware of how things are for me. That didn't phase him and he is still about lol.
Winning my esa and having my money paid correctly is also making my life so much easier and one less thing for me to worry about.
My support worker filled in my DLA forms which were sent in august 16th, am still waiting for a reply from them, they say no news is good news, but we shall see lol.
The kids are doing well at school and my daughter is in her last year, which is scary, but they both seem more settled this year and both doing extremely well.
I saw Rheumatologist last week who wants me to continue as i am with my meds and will see me again in 6 months. If in the meantime i have a flare or swelling i am to go to doctor for blood test to check for inflammation. Was only a quick chat, but because i had been ok for a while i didn't really have anything to moan about lol. Yes i still wake up stiff every morning and yes i still have to sit and take meds in morning before the pain eases and yes i still get pain everyday but things have been a lot more manageable and i am happy. Happy happy happy lol.
Friday, 20 July 2012
Who would have thought simple exercises could be so hard
Been a busy few weeks with lots of people coming and going.
I have had a carer come in early mornings to assist with showering and dressing.. Then a carer coming in the afternoon to do exercises with me..
The morning routine has been a great help.. I have now been shown how to get into the bath safeley(without falling flat on my arse lol). how to dry myself without bending down and how to dress myself with what they call a grabber.. The grabber is hard work and takes some serious getting used to,, was there for ages yesterday trying to pull up my trousers while using the grabber, took me a good few minutes but saved me bending down lol..
The exercises have been tough.. All to do with strengthening my muscles..The exercises are to be done from lying down on my bed.
The first week consisted of some gentle exercises, such as bum clenching for 30 seconds(5x), lifting each leg up slightly and holding for 5 secs,(5x) Bending my knee up and back down again (5x).. over a few days i have increased some of them up to 10..I have felt very tired after the exercises but have continued to push myself as i am prepared to try and do anything to help especially if it is going to better my life..
Over the weekend i have been given some extra exercises which have been tough and have left me in the position i am now which is hardly being able to walk due to pain in my hips, mainly my left..The extra exercises were, Knees bent(from lying position) then let one knee go to the side as far as i can then back again(5x) this i thought would be the worst one, but was actually not to bad, as i could control how far i wanted my leg to go. The other on was again knees bent up and lifting my pelvis up and then back down(3x), this was tough but great for my hips,,, now the one that has knocked me about actually sounds really easy but it has been the one that has done the most damage. Lay on side with knee bent and other leg straight then raising straight leg 5 times..Lying on my side is difficult as it is especially straight lol, but the raising of the leg just didnt agree with my hips and has buggered me up.I had to cancel carers on wednesday as could hardly walk and was going to cancel yesterday aswell but i wanted a shower and i knew i could get help with the carer here.. I explained to her why i cancelled and how things were, she said it wasnt a problem and knew that i was cancelling for a good reason, not just because i can't be bothered. So she spoke to the office and they have suggested that they alternate the days of showering and exercising. So today i am not having a morning carer but will have them come out in the afternoon for exercises and morning shower tomorrow,,this will hopefully make things a little easier for my body well my hips and not put so much pressure on me..We shall see..
I have woken this morning and my hips do feel a little better but am still in need of walking round with crutches and having no free hands,, bloody hard and annoying lol.. but least the crutches keep me upright and not flat on my arse lol..
Had my support worker come round yesterday to help with filling out my DLA form. He is doing it for me, saves my hands and together we are trying to do it..we got half way through and are continuing Tuesday to hopefully finish off. Again i am not holding out much hope but you don't know unless you try , and you never know it may be third time lucky lol..
My ESA that i won at 22nd June has still not been sorted, i am still on assessment rate and have had no paperwork or acknowledgement from them.. I have rang and been told it can take a few weeks to sort, .. I f owed them money they would be on my back constantly lol.. Be interesting to see how long it does take..
Some of you may have read in previous post that i am now on my own with the children, i just wanted to share that i am getting on fine now and between the kids and i we have a good routine set up and we work together to get things done.. The cleaning is done on a rota(not that the kids always stick to it lol) and the cooking is done with my son and i working together.. At first i thought it was going to be a great struggle, but being independent has definitely boosted my confidence and making me smile even more..
So at the moment apart from my arthritis, fibromyalgia, nerve problems and ear problems, lol life is good and i remain positive for the future...
I have had a carer come in early mornings to assist with showering and dressing.. Then a carer coming in the afternoon to do exercises with me..
The morning routine has been a great help.. I have now been shown how to get into the bath safeley(without falling flat on my arse lol). how to dry myself without bending down and how to dress myself with what they call a grabber.. The grabber is hard work and takes some serious getting used to,, was there for ages yesterday trying to pull up my trousers while using the grabber, took me a good few minutes but saved me bending down lol..
The exercises have been tough.. All to do with strengthening my muscles..The exercises are to be done from lying down on my bed.
The first week consisted of some gentle exercises, such as bum clenching for 30 seconds(5x), lifting each leg up slightly and holding for 5 secs,(5x) Bending my knee up and back down again (5x).. over a few days i have increased some of them up to 10..I have felt very tired after the exercises but have continued to push myself as i am prepared to try and do anything to help especially if it is going to better my life..
Over the weekend i have been given some extra exercises which have been tough and have left me in the position i am now which is hardly being able to walk due to pain in my hips, mainly my left..The extra exercises were, Knees bent(from lying position) then let one knee go to the side as far as i can then back again(5x) this i thought would be the worst one, but was actually not to bad, as i could control how far i wanted my leg to go. The other on was again knees bent up and lifting my pelvis up and then back down(3x), this was tough but great for my hips,,, now the one that has knocked me about actually sounds really easy but it has been the one that has done the most damage. Lay on side with knee bent and other leg straight then raising straight leg 5 times..Lying on my side is difficult as it is especially straight lol, but the raising of the leg just didnt agree with my hips and has buggered me up.I had to cancel carers on wednesday as could hardly walk and was going to cancel yesterday aswell but i wanted a shower and i knew i could get help with the carer here.. I explained to her why i cancelled and how things were, she said it wasnt a problem and knew that i was cancelling for a good reason, not just because i can't be bothered. So she spoke to the office and they have suggested that they alternate the days of showering and exercising. So today i am not having a morning carer but will have them come out in the afternoon for exercises and morning shower tomorrow,,this will hopefully make things a little easier for my body well my hips and not put so much pressure on me..We shall see..
I have woken this morning and my hips do feel a little better but am still in need of walking round with crutches and having no free hands,, bloody hard and annoying lol.. but least the crutches keep me upright and not flat on my arse lol..
Had my support worker come round yesterday to help with filling out my DLA form. He is doing it for me, saves my hands and together we are trying to do it..we got half way through and are continuing Tuesday to hopefully finish off. Again i am not holding out much hope but you don't know unless you try , and you never know it may be third time lucky lol..
My ESA that i won at 22nd June has still not been sorted, i am still on assessment rate and have had no paperwork or acknowledgement from them.. I have rang and been told it can take a few weeks to sort, .. I f owed them money they would be on my back constantly lol.. Be interesting to see how long it does take..
Some of you may have read in previous post that i am now on my own with the children, i just wanted to share that i am getting on fine now and between the kids and i we have a good routine set up and we work together to get things done.. The cleaning is done on a rota(not that the kids always stick to it lol) and the cooking is done with my son and i working together.. At first i thought it was going to be a great struggle, but being independent has definitely boosted my confidence and making me smile even more..
So at the moment apart from my arthritis, fibromyalgia, nerve problems and ear problems, lol life is good and i remain positive for the future...
Monday, 2 July 2012
Making life easier
Today is a good day. Am relieved that my hips have eased and i can walk, woo hoo lol.
I had a visit from the lady from the personal independent team today. She brought with her a few gadgets/aids for me to try and see how i got on with them.
First was an aid to help me put my socks on as you can see it doesn't look like much and too be honest probably doesn't even look like it will work but it does. 3 easy steps an wallah socks are on.
I also received a sponge on a stick to reach all the places i cant lol
Something to dry in between my toes.
I received a raised toilet seat which has been fitted and the difference is unbelievable, something so small can make so much difference and make my life easier.
The people who have been helping me are amazing and they have made my life better and easier for me, and i suppose more independent, no more relying on others so much..
I know some people feel funny about using aids etc, but i just wanted to say even though i am 32 and never thought i would be in this position 3 yrs ago, now i am, i know that anything that can help me, also helps my kids too and i am happy for all the aids i have received and will be using them all the time.
If anyone worries about using aids then please don't, if it makes your life easier who cares what others think, we have enough to deal with as it is without worrying about what people think..
I had a visit from the lady from the personal independent team today. She brought with her a few gadgets/aids for me to try and see how i got on with them.
 |
| The sock aid |
 |
| Place sock on |
 |
| Place foot inside |
 |
| Slide the aid off your foot |
I also received a sponge on a stick to reach all the places i cant lol
Something to dry in between my toes.
I received a raised toilet seat which has been fitted and the difference is unbelievable, something so small can make so much difference and make my life easier.
The people who have been helping me are amazing and they have made my life better and easier for me, and i suppose more independent, no more relying on others so much..
I know some people feel funny about using aids etc, but i just wanted to say even though i am 32 and never thought i would be in this position 3 yrs ago, now i am, i know that anything that can help me, also helps my kids too and i am happy for all the aids i have received and will be using them all the time.
If anyone worries about using aids then please don't, if it makes your life easier who cares what others think, we have enough to deal with as it is without worrying about what people think..
Tuesday, 26 June 2012
Tough few days
Since my appeal Thursday, my hips haven given me hell.
Friday and saturday was such a struggle to move about, hard work and painful.
So frustrating being limited to things you can and cant do..
Sunday was a better day, could feel it easing up and yesterday was alot better, no crutches needed..
Today i have woken with my knee throbbing on and off and my hips feeling very kind of sensitive, too much and i'm done in kind of thing..I feel rough weak and very tired...
I would like to be able to go shop and get bits and bobs, but i have no chance of that, my body is just not going to let me..
I had one of the nice ladies from the personal independent team come out today, she fitted in my bath board and we went through a trial run of how to safely get in and out, she is also coming out next week with a few aids to go through with me to help with dressing and undressing,, She is hoping that next week i can be put on the rota so someone can come out in morning to help with morning routine, enabling me to build up my confidence so that i can get in shower and that on my own in the future without fear of falling..I shall then have exercises in the afternoon for 15mins, the following week they will help me with morning and evening(cooking) routine again building up confidence, teaching me some new tips so at the end of the 6 weeks i am feeling and able to be more independent..
I think it is going to feel very strange at first having strangers come into my home to help me with showering etc, but i know in the long run it will be beneficial to me and it is going to help me soooooo much..
I will report on how i get on with it next week.
My eyes are going so looks like i need to go and have lie down and maybe wake up feeling a bit better and more with it and awake...we shall see lol....
Friday and saturday was such a struggle to move about, hard work and painful.
So frustrating being limited to things you can and cant do..
Sunday was a better day, could feel it easing up and yesterday was alot better, no crutches needed..
Today i have woken with my knee throbbing on and off and my hips feeling very kind of sensitive, too much and i'm done in kind of thing..I feel rough weak and very tired...
I would like to be able to go shop and get bits and bobs, but i have no chance of that, my body is just not going to let me..
I had one of the nice ladies from the personal independent team come out today, she fitted in my bath board and we went through a trial run of how to safely get in and out, she is also coming out next week with a few aids to go through with me to help with dressing and undressing,, She is hoping that next week i can be put on the rota so someone can come out in morning to help with morning routine, enabling me to build up my confidence so that i can get in shower and that on my own in the future without fear of falling..I shall then have exercises in the afternoon for 15mins, the following week they will help me with morning and evening(cooking) routine again building up confidence, teaching me some new tips so at the end of the 6 weeks i am feeling and able to be more independent..
I think it is going to feel very strange at first having strangers come into my home to help me with showering etc, but i know in the long run it will be beneficial to me and it is going to help me soooooo much..
I will report on how i get on with it next week.
My eyes are going so looks like i need to go and have lie down and maybe wake up feeling a bit better and more with it and awake...we shall see lol....
Saturday, 23 June 2012
I won my appeal..
As most of you know i applied for ESA(employment and support allowance) last February. I had a medical June by someone who wasn't even a registered doctor. When the medical report come in the post i thought it was for someone else as it was full of lies and had missing vital information regarding my condition that i had told him. He said i was fit for work and should be back in employment within 3 months..Yeah right, i wish...
Anyway last June i was dismissed from work on ill health grounds and i began the process of appealing the decision....
I got in touch with CAB(citizens advice beareu ) and together we put together my submission along with a letter from my doctor,consultant and pages from my blog. I didn't realise it would take a year for the appeal to be heard. What a long year that was, stressing about it wondering when it was going to be D-day..
So few weeks a go i finally got the date through,22ndJune, I was crapping myself to say the least..I had no faith in the system and even contemplated not going as i seriously thought i had no hope..Then i heard a little voice in my head that said "when have you ever given up before" and it was right, i haven't given up before and why should i give up now just because i am not well.
I woke on Thursday feeling naff. My hips were sore and i was dreading it.
Although my partner and i are not together anymore, he did come with me to support me Thursday and i was glad he was there to keep me going.
When we finally got to where the hearing was being held, i felt awful, but i was trying not to let the pain get me down and kind of ride through it until the hearing was over.
As we approached the desk i was asked if i can use the stairs as the lifts were out of action(this is something i believe they use to catch people out) Straight away scott said no, and we were then ushered upstairs using the staff lift, in the waiting room the chairs were very low to the floor probably another ploy to catch people out.There were only 3 high backed chairs with cushions that were suitable for someone with similar difficulties as me to sit on...shocking..
The clerk come out to introduce herself and explained that there was a doctor and a lady judge on the panel who are independent and have nothing to do with the Department for work and pensions.This made me feel a bit better. Also my CAB officer was here involved in a earlier case and will be able to come into my hearing and support me, another bonus i thought..
The previous hearing was running a little late and i was getting uncomfortable and agitated waiting, and the longer i was in the waiting room the more nervous i was getting.
After waiting half an hour it was my turn to be called in. In the room there was no chairs high enough for me to sit on so scott was allowed to bring the high back seat i was sitting on in the waiting room.
Was introduced to the doctor and the judge who seemed ok and made me feel a bit more at ease.
They explained to me that they were going to access the appeal based on my form i supplied last year and that i was to try and remember as best as i could how my illness was affecting me at the time... Great one i thought..
The doctor was the first to ask me questions. He asked me to explain how i was last year and how my condition is now, what difficulties i faced, medication,any help from OT,Physio etc.. The doctor seemed to be very happy with the answers i was giving him and obviously could see i knew what i was going on about and wasn't making it up.. phew i thought..Then it was the Judges turn to ask me questions..what a biatch she was lol...She asked me questions different ways to try and catch me out, asked me how i didi various things, questioned me again and again on things i had put in my form and whether i could back up the answers i had given etc..I knew i had told them everything i could but when i came out after 45 minutes i really thought i hadn't won..
Was told to wait in the waiting area while they made a decision, i didn't want to go back in the room, it was a mission getting there as it was i didn't fancy going back in to be denied.
After 5 minutes of waiting the clerk called us to go back in and i let my CAB officer do it for me..when he came out he showed no sign on his face of anything, when he handed me the paper and it said appeal allowed , i was shocked.. i couldn't believe it, I won, after a year of stressing i had won, woo hoo. I thanked my CAB work for his help and assistance and he said he was happy that i had won as i deserved too..
Since Thursday the news is slowly starting to sink in that i have won my appeal, i am just suffering now with my hips and back big time and walking is a real problem at the moment. I am sure when i get my money backdated from what they owe me it will finally sink in and then i can celebrate...
Thursday, 14 June 2012
Shook myself up
Past few days my wrists and elbows have been really gnawing, its the gnawing pain that usually gets me down as it is constant and very painful, like it's eating away at me.
Yesterday i struggled going shopping. I normally shop on line but tesco was unable to deliver till Friday and i needed supplies as soon as, so i knew i needed to try and do it myself. Went to iceland and got that ordered on home delivery and went to the shop next door getting smellies toiletries etc. I managed but by the time i got home i felt tired sore and irritable, but at the same time it was an achievement on my part.
My son has been an absolute angel, running errands, going to the bank and making me cups of tea. Last night my friend and her son went to the cinema and McDonalds. Money is tight but i wanted to treat him as he has been such a big help.I don't know what i would of done if he wasn't here.
Sitting in the cinema was a nightmare, trying to get comfy, i even took my own cushion to support my back and hips. Too others i must have looked like i had ants in my pants lol,, least i had some comfort though.
By the time i got home i was even more sore and irritable, i wanted to saw my wrists off, took meds and chilled in bed.
This morning i woke feeling pretty much the same, it was an effort getting out of bed and to get changed as it hurt and i was tired..
When the kids had gone to school, i came downstairs to do myself a drink, what happened next happened so fast i cant even tell you how it happened, all i know is i went down. It was if my body had just given up. I fell on the kitchen floor and it hurt. I lay there for a good 10 mins trying to recompose myself and work out if i could get myself up. Luckily for me there is a stair gate across the kitchen door to stop the dogs from coming in and out, as i landed right there i was able to pull myself up.
My arm hurt and felt like i twisted my knee and i dont even know how it happened.
Normally if you fall its due to slipping or tripping or something like that, i just went and thats what has shook me up. Suppose in a way has made me feel vunerable? not sure if that is the right word to use but i know i dont feel too good.
I need to get some positive vibes and put a smile on my face, so if you can send them through cyberspace to me, i would very much appreciate it..
Tomorrow will be a better day...
Yesterday i struggled going shopping. I normally shop on line but tesco was unable to deliver till Friday and i needed supplies as soon as, so i knew i needed to try and do it myself. Went to iceland and got that ordered on home delivery and went to the shop next door getting smellies toiletries etc. I managed but by the time i got home i felt tired sore and irritable, but at the same time it was an achievement on my part.
My son has been an absolute angel, running errands, going to the bank and making me cups of tea. Last night my friend and her son went to the cinema and McDonalds. Money is tight but i wanted to treat him as he has been such a big help.I don't know what i would of done if he wasn't here.
Sitting in the cinema was a nightmare, trying to get comfy, i even took my own cushion to support my back and hips. Too others i must have looked like i had ants in my pants lol,, least i had some comfort though.
By the time i got home i was even more sore and irritable, i wanted to saw my wrists off, took meds and chilled in bed.
This morning i woke feeling pretty much the same, it was an effort getting out of bed and to get changed as it hurt and i was tired..
When the kids had gone to school, i came downstairs to do myself a drink, what happened next happened so fast i cant even tell you how it happened, all i know is i went down. It was if my body had just given up. I fell on the kitchen floor and it hurt. I lay there for a good 10 mins trying to recompose myself and work out if i could get myself up. Luckily for me there is a stair gate across the kitchen door to stop the dogs from coming in and out, as i landed right there i was able to pull myself up.
My arm hurt and felt like i twisted my knee and i dont even know how it happened.
Normally if you fall its due to slipping or tripping or something like that, i just went and thats what has shook me up. Suppose in a way has made me feel vunerable? not sure if that is the right word to use but i know i dont feel too good.
I need to get some positive vibes and put a smile on my face, so if you can send them through cyberspace to me, i would very much appreciate it..
Tomorrow will be a better day...
Wednesday, 13 June 2012
A positive step forward
Yesterday i met my support worker for the first time. He was such a friendly, laid back kind of guy and has had experience of a disability due to a motorbike accident so was fully aware of the difficulties that people can face.
He had put together a support plan from the information that was provided by me in my initial assessment and together we went through it, discussing each need.
Here are the list of the things he is going to help me with:
All the above is a great help and i am really appreciative of every bit of information and help that i am receiving. It has lifted my spirits and is definitely a positive step forward in the right direction
He had put together a support plan from the information that was provided by me in my initial assessment and together we went through it, discussing each need.
Here are the list of the things he is going to help me with:
- Applying for DLA
- Chasing up OT referral for a downstairs bathroom
- Installing lifeline (This was installed today, i have a bracelet that i wear which has a button on, if i have an accident/fall and need help and assistance then i press the red button, this sends a call to the office who then speak to me to see what the situation is. This is going to be so beneficial for me and make me feel safer, but also for my children who will be able to go to school/out without worrying that i am going to have an accident and not have anyone to help me. I am so grateful)
- Having the personal Independence team coming in my home for 6 weeks learning me and showing me new skills for independent living.
- Putting me in touch with the young carers association so that my 2 children can have rest bites and talk to other children in similar situations.
- Seeing if he can get me any help with either a mobility scooter or wheelchair enabling me to go out on days when i am unable to use my crutches.
All the above is a great help and i am really appreciative of every bit of information and help that i am receiving. It has lifted my spirits and is definitely a positive step forward in the right direction
Tuesday, 29 May 2012
Frustration took over
I had what i would call a right moment last night.
After a good afternoon regarding my needs assessment i felt positive but for some bizarre i kind of lost the plot when the kids came home.
I didnt feel great yesterday and fet very drained, no energy so thought i would save the hassle of struggling to cook and have chippy instead. I forgot the local chippy is closed on a monday so that scuppered my ideas of an easy tea. Great i thought, now i need to think what i am going to do that is going to be quick and easy. After a quick scan i thought sausage chips and beans would be ideal.
My daughter and her bf were doing the garden for me and needed and an extension, so while i was in kitchen cooking they were upstairs sorting out the extension. All of a sudden i heard a massive bang and my daughter going OH NOOOO, so with difficulty i got up and went to investigate at the bottom of the stairs, it was too much effort to be going up, so i shouted at the bottom of stairs to see what was happening..My daughter had accidently knocked over a tub of paint and it was all over the floor, ,, i felt like screaming because i couldnt get up there quick enough to sort it out and the dinner was cooking, i knew it was an accident, but i was stressing that i wasn't able to quickly race up the stairs and sort it out. After much confusion and trying to explain to my daughter where what was to clean it up i went back in to kitchen to sort tea out. Dinner was cooked and the sausages were burnt.Grrrrrr i was thinking,, I nearly dropped the chips as i took them out the oven, spilt some of the beans on the side because my wrists were weak and it seemed to be all going to pot.. After dishing dinner up i went to go and sit down and eat, on my way to the table while holding myself up with my stick and dinner in other hand i could feel as if my hand was gonna go, someone had left something on the floor i nearly went on it so that got me grrr again, the next thing i know i through my dinner up the bookcase, my stick up the wall and broke down in to tears. I kind of sat on the stairs and tooka moment to breathe and contain myself, after about 20 minutes and the kids trying to put my dinner back on my plate i calmed down.. I immediately apologised to the kids for my outburst and tried to explain that i was frustrated about things and that i was sorry i had done that infront of them... They were both really good and gave me the biggest hug.
After an aventful dinner the kids were outside doing the garden so i sat outside with a cuppa, i was watching them and thinking how great they are and no matter how shite i feel they always put a smile on my face. I love them to bits.
Today i have woke up feeling better although the sun is hiding behind the clouds today i am going to try and keep smiling and remain upbeat and positive..
After a good afternoon regarding my needs assessment i felt positive but for some bizarre i kind of lost the plot when the kids came home.
I didnt feel great yesterday and fet very drained, no energy so thought i would save the hassle of struggling to cook and have chippy instead. I forgot the local chippy is closed on a monday so that scuppered my ideas of an easy tea. Great i thought, now i need to think what i am going to do that is going to be quick and easy. After a quick scan i thought sausage chips and beans would be ideal.
My daughter and her bf were doing the garden for me and needed and an extension, so while i was in kitchen cooking they were upstairs sorting out the extension. All of a sudden i heard a massive bang and my daughter going OH NOOOO, so with difficulty i got up and went to investigate at the bottom of the stairs, it was too much effort to be going up, so i shouted at the bottom of stairs to see what was happening..My daughter had accidently knocked over a tub of paint and it was all over the floor, ,, i felt like screaming because i couldnt get up there quick enough to sort it out and the dinner was cooking, i knew it was an accident, but i was stressing that i wasn't able to quickly race up the stairs and sort it out. After much confusion and trying to explain to my daughter where what was to clean it up i went back in to kitchen to sort tea out. Dinner was cooked and the sausages were burnt.Grrrrrr i was thinking,, I nearly dropped the chips as i took them out the oven, spilt some of the beans on the side because my wrists were weak and it seemed to be all going to pot.. After dishing dinner up i went to go and sit down and eat, on my way to the table while holding myself up with my stick and dinner in other hand i could feel as if my hand was gonna go, someone had left something on the floor i nearly went on it so that got me grrr again, the next thing i know i through my dinner up the bookcase, my stick up the wall and broke down in to tears. I kind of sat on the stairs and tooka moment to breathe and contain myself, after about 20 minutes and the kids trying to put my dinner back on my plate i calmed down.. I immediately apologised to the kids for my outburst and tried to explain that i was frustrated about things and that i was sorry i had done that infront of them... They were both really good and gave me the biggest hug.
After an aventful dinner the kids were outside doing the garden so i sat outside with a cuppa, i was watching them and thinking how great they are and no matter how shite i feel they always put a smile on my face. I love them to bits.
Today i have woke up feeling better although the sun is hiding behind the clouds today i am going to try and keep smiling and remain upbeat and positive..
Monday, 28 May 2012
My needs assessment
This afternoon i was visited by 2 lovely ladies to do a needs assessment on me.If it wasn't for my friend J i would never had done this myself as it is hard to think that you may need help. I am so glad i did.
They asked me various questions about my day to day living and what i find hard and what i struggle with.
I explained that at the moment my difficulties are in the kitchen, cooking and preparing meals, getting in and out the bath and getting out the house socially.
They have a few ideas in mind to help and support me, if certain things can be done then it will help a great deal and give me some independance back.
The other thing i am really excited about is they mentioned an organisation called the young carers association which is a group that my children could go to, talk and share with other kids in the same situation that understand. That would be such a great suppport for them. Its important that they have a normal life like other kids and not feel so much pressure to help and care for me.
So all in all a positive day, a day where things are going forward...
They asked me various questions about my day to day living and what i find hard and what i struggle with.
I explained that at the moment my difficulties are in the kitchen, cooking and preparing meals, getting in and out the bath and getting out the house socially.
They have a few ideas in mind to help and support me, if certain things can be done then it will help a great deal and give me some independance back.
The other thing i am really excited about is they mentioned an organisation called the young carers association which is a group that my children could go to, talk and share with other kids in the same situation that understand. That would be such a great suppport for them. Its important that they have a normal life like other kids and not feel so much pressure to help and care for me.
So all in all a positive day, a day where things are going forward...
The wonderer has returned...
I have been AWOL for a few months due to personal reasons and i am sorry i vanished without reason so to speak, but now i am back and can maybe fill you in on the past few months on how things have been and what progress has been made if any...
Last time i posted i was seeing neurologist for my nerve problems, since then i have had a nerve conductivity test and am awaiting the results for them.Glad to say the MRI on brain and spinal cord was clear too, so that was a huge relief.
Last week i went and saw my new Rheumatologist at my local hospital.He is basically starting from scratch as he had no notes of any test results bloods or anything which is not good,. I had X-rays of hands, chest,pelvis and feet, more bloods and am due to see him in 3 months. He wanted me to stop steroid injections immediately as he wants to see me flare. I suppose he wants to see how my hands swell etc so he has said if that happens in the meantime i am too ring and he will get me in so he can see for himself. Am quite confident with how he is doing things so all is good on that front, i dont want to rely on steroids as i know it is not the best drug to take Although it does work miracles so to speak...I did mention to Rheumy about Fibromyalgia (neurologist mentioned it to me) he said i have some of the pressure points associated with it and suspected that if i was in full flare then i would have most of them. He said Fibromyalgia is the same as chronic pain syndrome just a different word, well when i went to see rheumy at the beginning over 18 months ago he said i had CPS so does that mean i have Fibromyalgia?? It never straight forward, it would be so much easier if the docs could all use the same terms, then i would know where im at lol..
Today i am having a needs assesment done. I am having 2 people come round to see me and ask me about my day to day living and to see if they can provide any help or assistance. Now my partner is no longer living with me things are alot more difficult and i hate having to rely and ask the kids to help me. I am a bit nervous as no-one ever like to admit or even think that they need help, but realistically any kind of added support would be great not just for me but for my children too, so as they say, every little bit helps...I will post and let you know how it goes.
Last time i posted i was seeing neurologist for my nerve problems, since then i have had a nerve conductivity test and am awaiting the results for them.Glad to say the MRI on brain and spinal cord was clear too, so that was a huge relief.
Last week i went and saw my new Rheumatologist at my local hospital.He is basically starting from scratch as he had no notes of any test results bloods or anything which is not good,. I had X-rays of hands, chest,pelvis and feet, more bloods and am due to see him in 3 months. He wanted me to stop steroid injections immediately as he wants to see me flare. I suppose he wants to see how my hands swell etc so he has said if that happens in the meantime i am too ring and he will get me in so he can see for himself. Am quite confident with how he is doing things so all is good on that front, i dont want to rely on steroids as i know it is not the best drug to take Although it does work miracles so to speak...I did mention to Rheumy about Fibromyalgia (neurologist mentioned it to me) he said i have some of the pressure points associated with it and suspected that if i was in full flare then i would have most of them. He said Fibromyalgia is the same as chronic pain syndrome just a different word, well when i went to see rheumy at the beginning over 18 months ago he said i had CPS so does that mean i have Fibromyalgia?? It never straight forward, it would be so much easier if the docs could all use the same terms, then i would know where im at lol..
Today i am having a needs assesment done. I am having 2 people come round to see me and ask me about my day to day living and to see if they can provide any help or assistance. Now my partner is no longer living with me things are alot more difficult and i hate having to rely and ask the kids to help me. I am a bit nervous as no-one ever like to admit or even think that they need help, but realistically any kind of added support would be great not just for me but for my children too, so as they say, every little bit helps...I will post and let you know how it goes.
Saturday, 24 March 2012
Hoping today will be a better day
Yesterday i decided i needed to do something about my pain. I doubted wether i would be ok over the weekend. When the pain is constant and shows no sign of easing or letting up and you have taken all the pain meds you can your kind of at the end of the road so to speak, well thats how you feel..
I rang up to get a telephone appointment hoping i could get a prescription and my BM could kindly collect it for me. There wasnt a telephone slot available, but as soon as i said my name the receptionist said " ooh i know who you are now, your in here all the time,i shall fill you in and make sure a doctor calls you before 12" you reckon i should set a bed up and maybe move in lol.. be easier..
Anyway Doc rang me and was unsure what to give me(he wasnt my usual GP) He said i was on all the tablets i could have, after looking at notes and lots of mmmmm's he said he felt another steroid injection would maybe do the job, He said he would need to order it in but would'nt arrive till after 3, gave me an appointment for
4-20pm..When my BM dropped me off, receptionist said that the injection hadnt arrived and that i could wait another hr if need be, i explained i wouldnt be able to wait and hour and could i see doc to ask for somnething in the meantime...After a thorough exam on my hips and more mmmming he said he would put me on a 7 day morphine path, Brutans, 5mg released every hour. Then return to see him in a weeks time for steroid injection if need be.
Phew i was thinking, something to finally take the edge off things.i hoped. I placed the patch on as soon as i could.
Since the patch has been on, i do kind of feel more at ease, not so tight and bit more comfortable.Too be honest i have only got up to the toilet once and am still sat in bed, i know it still hurts when i am walking, but i am hoping that throughout the day it gets a little easier. The sun is shining outside, and i dont want to be stuck upstairs in me room for another day, sitting in the garden and reading a book will be lovely and much more enjoyable too.
I am hoping things ease soon, it is horrible being so restricted and can make you feel lonely at times,shut off from the outside world. I am not saying i want to be dancing or running around like a headless chicken lol, but a bit more freedom to move would make my day today..fingers crossed eh and toes too please lol.
I rang up to get a telephone appointment hoping i could get a prescription and my BM could kindly collect it for me. There wasnt a telephone slot available, but as soon as i said my name the receptionist said " ooh i know who you are now, your in here all the time,i shall fill you in and make sure a doctor calls you before 12" you reckon i should set a bed up and maybe move in lol.. be easier..
Anyway Doc rang me and was unsure what to give me(he wasnt my usual GP) He said i was on all the tablets i could have, after looking at notes and lots of mmmmm's he said he felt another steroid injection would maybe do the job, He said he would need to order it in but would'nt arrive till after 3, gave me an appointment for
4-20pm..When my BM dropped me off, receptionist said that the injection hadnt arrived and that i could wait another hr if need be, i explained i wouldnt be able to wait and hour and could i see doc to ask for somnething in the meantime...After a thorough exam on my hips and more mmmming he said he would put me on a 7 day morphine path, Brutans, 5mg released every hour. Then return to see him in a weeks time for steroid injection if need be.
Phew i was thinking, something to finally take the edge off things.i hoped. I placed the patch on as soon as i could.
Since the patch has been on, i do kind of feel more at ease, not so tight and bit more comfortable.Too be honest i have only got up to the toilet once and am still sat in bed, i know it still hurts when i am walking, but i am hoping that throughout the day it gets a little easier. The sun is shining outside, and i dont want to be stuck upstairs in me room for another day, sitting in the garden and reading a book will be lovely and much more enjoyable too.
I am hoping things ease soon, it is horrible being so restricted and can make you feel lonely at times,shut off from the outside world. I am not saying i want to be dancing or running around like a headless chicken lol, but a bit more freedom to move would make my day today..fingers crossed eh and toes too please lol.
Friday, 23 March 2012
Hate not being able to walk properly
Day 3 of i can hardly walk.
I have spent 3 days upstairs in the bedroom as i have no bathroom downstairs, as i am struggling walking up and down the stairs it is just easier upstairs. I do feel i am away from the world, confind to a small space, but what choice do i have when my body will not let me walk pain free.
My hips are throbbing, my left more so, every step i take the pain in my hip, lower back and sometimes pain up my spine is ouch ouch ouch.
I am surprised i not got sores on me bum for sitting down for so long lol.. The pain is not so bad sitting down, i can deal with it, walking is just so difficult.
My partner came home from work yesterday, took one look at me and said i need to go to A&E, i tried to explain to him that going to hospital is not going to help, they cant cure my arthritis and make me walk.He said well something needs to be done as you cant be like this forever.. I could see his frustration, but its so hard to explai things to him, he sees me suffering and in pain, and he cant help , but wants the medical profession too, if it was only that easy.. i wish..Not being able to walk properly restricts everything, and its days like these that i feel lonely and isolated, i am away from everyone, like being grounded lol..
Today i am due to go to 2 school shows, my niece and nephew have a tea day at school and they raise money for charity, which i said i would go to and my daughter has her performing arts production at school which i am definately going to, but its going to be hard and i am going to have to grin and bear it as i cant let arther beat me today, i wont let it beat me today...
I have spent 3 days upstairs in the bedroom as i have no bathroom downstairs, as i am struggling walking up and down the stairs it is just easier upstairs. I do feel i am away from the world, confind to a small space, but what choice do i have when my body will not let me walk pain free.
My hips are throbbing, my left more so, every step i take the pain in my hip, lower back and sometimes pain up my spine is ouch ouch ouch.
I am surprised i not got sores on me bum for sitting down for so long lol.. The pain is not so bad sitting down, i can deal with it, walking is just so difficult.
My partner came home from work yesterday, took one look at me and said i need to go to A&E, i tried to explain to him that going to hospital is not going to help, they cant cure my arthritis and make me walk.He said well something needs to be done as you cant be like this forever.. I could see his frustration, but its so hard to explai things to him, he sees me suffering and in pain, and he cant help , but wants the medical profession too, if it was only that easy.. i wish..Not being able to walk properly restricts everything, and its days like these that i feel lonely and isolated, i am away from everyone, like being grounded lol..
Today i am due to go to 2 school shows, my niece and nephew have a tea day at school and they raise money for charity, which i said i would go to and my daughter has her performing arts production at school which i am definately going to, but its going to be hard and i am going to have to grin and bear it as i cant let arther beat me today, i wont let it beat me today...
Tuesday, 20 March 2012
Occupational Therapy Visit
Woke today feeling not too bad.
An hour after walking about doing bits and pieces, the gears in my hips were sticking and grinding, the left more so..
I knew i had to go downstairs to wait for OT so got my bag on my shoulder with meds, laptop, phone and chargers,I threw down the stairs my pillow that supports my back and hips and then slid the stool down the stairs, trekking up and down the stairs would be such a mission, so i was determined it was going to be one trip, and one trip down the stairs only lol..
OT was coming in the morning, any-time between 9-12, she came at just after half 11.
She was a different lady from before, but she was very nice.
We discussed many things, how i cope at home etc. I explained that most days i am upstairs as that is where my toilet is.. She said that it wasn't fair that i should stay upstairs so is asking someone from the council to come out and have a look to see if they can build a bathroom downstairs for me, enabling me to come downstairs and not having to go up and down, up and down lol. How ace would that be..? be so much easier for me.
I am also having extra rails in bathroom, new bathboard and steps outside my front door, making it easier for me to get in and out the house.
I am so grateful for there help as without it my life would be so much more difficult.They do a great job and have put a big smile on my face today..
An hour after walking about doing bits and pieces, the gears in my hips were sticking and grinding, the left more so..
I knew i had to go downstairs to wait for OT so got my bag on my shoulder with meds, laptop, phone and chargers,I threw down the stairs my pillow that supports my back and hips and then slid the stool down the stairs, trekking up and down the stairs would be such a mission, so i was determined it was going to be one trip, and one trip down the stairs only lol..
OT was coming in the morning, any-time between 9-12, she came at just after half 11.
She was a different lady from before, but she was very nice.
We discussed many things, how i cope at home etc. I explained that most days i am upstairs as that is where my toilet is.. She said that it wasn't fair that i should stay upstairs so is asking someone from the council to come out and have a look to see if they can build a bathroom downstairs for me, enabling me to come downstairs and not having to go up and down, up and down lol. How ace would that be..? be so much easier for me.
I am also having extra rails in bathroom, new bathboard and steps outside my front door, making it easier for me to get in and out the house.
I am so grateful for there help as without it my life would be so much more difficult.They do a great job and have put a big smile on my face today..
Saturday, 17 March 2012
Neurologist Appointment
Went and saw my neurologist yesterday, to talk about my freaky going ons lol.
I saw him 3 months previous where he sent me for MRI . My MRI was clear, which he said he was happy with as he was looking for signs of Mutiple Scerosis, am so relieved that was ok.
I ran through my symptoms again with him.
I am now to have vitamin B injections too see if that will help with the pins and needles.
He is also sending me off for a nerve conductivity test as he suspects peripheal neuropathy which i believe is nerve damage related to central nervous system..
http://www.ninds.nih.gov/disorders/peripheralneuropathy/detail_peripheralneuropathy.htm
In my head i am thinking great one, something else to add to my list of illnesses, something else that i need to learn to live with and come to terms with, something else that can only be controlled and not cured.. Great one eh? As you can tell i am a little deflated and annoyed.. I shall be ok again in a few days, get my head round it and just learn to accept and live with it.. Being miserable is not going to help me or my family, so onwards and upwards eh?...xx
I saw him 3 months previous where he sent me for MRI . My MRI was clear, which he said he was happy with as he was looking for signs of Mutiple Scerosis, am so relieved that was ok.
I ran through my symptoms again with him.
- Pins and needles in hands, legs and feet
- Numbness in hands legs and feet
- Cramp kind feeling in legs and arms
- Twitches
- Sensitive areas to touch on skin
I am now to have vitamin B injections too see if that will help with the pins and needles.
He is also sending me off for a nerve conductivity test as he suspects peripheal neuropathy which i believe is nerve damage related to central nervous system..
http://www.ninds.nih.gov/disorders/peripheralneuropathy/detail_peripheralneuropathy.htm
In my head i am thinking great one, something else to add to my list of illnesses, something else that i need to learn to live with and come to terms with, something else that can only be controlled and not cured.. Great one eh? As you can tell i am a little deflated and annoyed.. I shall be ok again in a few days, get my head round it and just learn to accept and live with it.. Being miserable is not going to help me or my family, so onwards and upwards eh?...xx
Tuesday, 13 March 2012
I'm not lazy, i'm just conserving energy
Along with Arthritis comes many other things, such as heavy feeling, achiness and that general feeling of fatigue.
I have heard from some people that this can be more debilitating than the pain sometimes..
For a week now i have had what i call the urgh feeling.. when i just don't feel right.
Am drained, tired, achy and generally feel naff, have me normal niggles too but this urgh feeling certainly drags you down.
I feel like i need a day in bed to sleep lol.. Maybe a day in bed doing nowt willl suddenly enforce my energy?? I doubt it.. Will a sleep marathon suddenly make me feel more alive?? doubt it too, putting me in a bag and shaking me up?? i wish it was just that easy..Don't we all lol..Energy on tap would be such a cool thing, as soon as we feel a little deflated just drink some energy from the tap, and hey presto, ..Am dreaming again lol..
I often feel lazy for sitting down and doing nowt, but i know i am not lazy, as when i have energy and feeling okish i will get up and do what needs doing and more, get it all done in one swoop..
You think that we would get used to listening to our bodies and doing what that little voice in our head tells us to do ,which is rest or take it easy.. We shall never learn as we all try and push ourselves, we want that reminder that things are still possible.,
Now the kids are at school and Scott is back to work i can chill without worrying about feeling guilty lol..
I have heard from some people that this can be more debilitating than the pain sometimes..
For a week now i have had what i call the urgh feeling.. when i just don't feel right.
Am drained, tired, achy and generally feel naff, have me normal niggles too but this urgh feeling certainly drags you down.
I feel like i need a day in bed to sleep lol.. Maybe a day in bed doing nowt willl suddenly enforce my energy?? I doubt it.. Will a sleep marathon suddenly make me feel more alive?? doubt it too, putting me in a bag and shaking me up?? i wish it was just that easy..Don't we all lol..Energy on tap would be such a cool thing, as soon as we feel a little deflated just drink some energy from the tap, and hey presto, ..Am dreaming again lol..
I often feel lazy for sitting down and doing nowt, but i know i am not lazy, as when i have energy and feeling okish i will get up and do what needs doing and more, get it all done in one swoop..
You think that we would get used to listening to our bodies and doing what that little voice in our head tells us to do ,which is rest or take it easy.. We shall never learn as we all try and push ourselves, we want that reminder that things are still possible.,
Now the kids are at school and Scott is back to work i can chill without worrying about feeling guilty lol..
Monday, 5 March 2012
A letter to family and friends
I have copied this, but thought it was a great letter they can be shared by many and understood..
Open letter to family and friends about Inflammatory Arthritis
One of the hardest things about Arthritis is that nobody knows what it is or how it affects you. This is an open letter to family and friends which tries to explain.
Dear Everyone,
This letter is to help you understand my feelings as I deal with inflammatory arthritis and the changes it brings to my life.
I am scared. I don’t know what the future holds for me. Will I end up crippled? ? Will I continue to be able to get out on my own or will I increasingly have to depend on others?
If you find me being quiet and reflective, please don’t think I am upset with you. I am trying to sort out my fears.
I am angry. I sometimes have difficulty just completing simple tasks, such as opening a jar, or lifting things. If I appear angry please understand it is the disease I am angry with, not you.
Likewise, please understand the difference between “happy” and “healthy”. When you’ve got flu you probably feel miserable with it, but it goes away. My disease won’t go away and I can’t be miserable all the time, in fact I work really hard at not being miserable. So if you’re talking to me and I sound happy, it means I am happy. Not that I am suddenly “better”. I may still be tired and/or I may still be in pain.
Please understand that chronic illnesses are variable. It’s quite possible that one day I am able to walk around all over the place, while the next day it’s agony just walking across the room. Please don’t think this means I’m faking it or than I could “do it if I tried”. I also want you to know that arthritis moves around. Yesterday my neck was throbbing; today it is my feet, who knows what it will be tomorrow? If you want me to do something, ask if I can and I’ll tell you. Please understand that if I say I have to sit down / lie down / take these pills now, that I do have to do it right now – it can’t be put off or forgotten just because I’m doing something.
If I ask for your help with something it is not because I am being lazy but because I really need help with it. It is not my goal to be a diva and have people waiting on me hand and foot. In fact, it’s rather embarrassing for me to have to ask for help with things I’ve been able to do up until my illness. For a while I wouldn’t ask for help and it would make me feel worse later. I am learning to deal with the embarrassment rather than putting myself through more pain.
I know sometimes I look perfectly healthy, but looks can be deceiving. Please understand that I am dealing with invisible pain and a lot of fatigue. Even on a good day I feel like you do when you have the flu, tired, achy and sore. Please don’t offer me sympathy; I don’t want your pity. But do offer me your support and understanding, which I truly appreciate.
Please don’t assume you know what is best for me. Arthritis has affected my joints, not my mind. I am capable of making my own decisions.
Most importantly of all, I still want to be part of the “gang”. Please continue to invite me to participate in activities. I’ll decide if I am capable of it. For example, you may think you are being considerate by not inviting me to go ice-skating with everyone else, but it hurts so much when you exclude me. Maybe I can’t skate with everyone else but I can bring the hot chocolate and watch and laugh with my friends just as I always have. In a similar vein, I may need to cancel an invitation at the last minute, if this happens please don’t take it personally; believe me I will have tried very hard not to cancel.
Finally, please remember that I am the same person I was before arthritis; arthritis doesn’t change the heart and soul. I still laugh, I still cry. I still love and I still hate. I still tease and joke with my friends and enjoy being on the receiving end of the same. I am me, I am not my disease. I am probably more compassionate to others with similar aches and pains now. Please continue to love me just as you did before. I need lots of love, understanding, support and hugs, but I don’t need to be treated with kid gloves.
Thanks for listening.
With love
Me xxx
Open letter to family and friends about Inflammatory Arthritis
One of the hardest things about Arthritis is that nobody knows what it is or how it affects you. This is an open letter to family and friends which tries to explain.
Dear Everyone,
This letter is to help you understand my feelings as I deal with inflammatory arthritis and the changes it brings to my life.
I am scared. I don’t know what the future holds for me. Will I end up crippled? ? Will I continue to be able to get out on my own or will I increasingly have to depend on others?
If you find me being quiet and reflective, please don’t think I am upset with you. I am trying to sort out my fears.
I am angry. I sometimes have difficulty just completing simple tasks, such as opening a jar, or lifting things. If I appear angry please understand it is the disease I am angry with, not you.
Likewise, please understand the difference between “happy” and “healthy”. When you’ve got flu you probably feel miserable with it, but it goes away. My disease won’t go away and I can’t be miserable all the time, in fact I work really hard at not being miserable. So if you’re talking to me and I sound happy, it means I am happy. Not that I am suddenly “better”. I may still be tired and/or I may still be in pain.
Please understand that chronic illnesses are variable. It’s quite possible that one day I am able to walk around all over the place, while the next day it’s agony just walking across the room. Please don’t think this means I’m faking it or than I could “do it if I tried”. I also want you to know that arthritis moves around. Yesterday my neck was throbbing; today it is my feet, who knows what it will be tomorrow? If you want me to do something, ask if I can and I’ll tell you. Please understand that if I say I have to sit down / lie down / take these pills now, that I do have to do it right now – it can’t be put off or forgotten just because I’m doing something.
If I ask for your help with something it is not because I am being lazy but because I really need help with it. It is not my goal to be a diva and have people waiting on me hand and foot. In fact, it’s rather embarrassing for me to have to ask for help with things I’ve been able to do up until my illness. For a while I wouldn’t ask for help and it would make me feel worse later. I am learning to deal with the embarrassment rather than putting myself through more pain.
I know sometimes I look perfectly healthy, but looks can be deceiving. Please understand that I am dealing with invisible pain and a lot of fatigue. Even on a good day I feel like you do when you have the flu, tired, achy and sore. Please don’t offer me sympathy; I don’t want your pity. But do offer me your support and understanding, which I truly appreciate.
Please don’t assume you know what is best for me. Arthritis has affected my joints, not my mind. I am capable of making my own decisions.
Most importantly of all, I still want to be part of the “gang”. Please continue to invite me to participate in activities. I’ll decide if I am capable of it. For example, you may think you are being considerate by not inviting me to go ice-skating with everyone else, but it hurts so much when you exclude me. Maybe I can’t skate with everyone else but I can bring the hot chocolate and watch and laugh with my friends just as I always have. In a similar vein, I may need to cancel an invitation at the last minute, if this happens please don’t take it personally; believe me I will have tried very hard not to cancel.
Finally, please remember that I am the same person I was before arthritis; arthritis doesn’t change the heart and soul. I still laugh, I still cry. I still love and I still hate. I still tease and joke with my friends and enjoy being on the receiving end of the same. I am me, I am not my disease. I am probably more compassionate to others with similar aches and pains now. Please continue to love me just as you did before. I need lots of love, understanding, support and hugs, but I don’t need to be treated with kid gloves.
Thanks for listening.
With love
Me xxx
Thursday, 1 March 2012
Coming to terms with Arthritis
Somebody tweeted yesterday and said that sometimes the emotions we experience can sometimes be worse than the physical.. That is so true..
Its not just about dealing with our arthritis but dealing with everything else that comes with it too.
I have only suffered for 18 months,( not long to some who have had it for many many yrs) but for me my life changed dramatically.
The way i have tried to deal with it is by just keep going, taking one day at a time, but the past few days a few things have happened and all the emotions i push to the back of my head have resurfaced making me think have i really come to terms with my arthritis or am i just ignoring it so i don't have to think about it.??
I don't think i have thought about how much my health has such an impact on my children and partner nor those closest to me. My daughter is 14 and has been learning about how arthritis affects people and complications that can arise etc, My daughter came home in tears, she never understood arthritis properly and now she is scared, she told me she worries about me everyday, that definitely pulled on my heart strings and i just sat there and thought wow this must be really hard for her, and if its this hard for her then how are other people in the family feeling?? What can i do to help?? have no idea..I already try and not show my pain which is hard if you cant move properly or pick things up etc but i have no idea how i can make this easier on those around me, they must be going through there own emotional battle.. Will my smile and my inner strength be enough for them not to worry?? i doubt it.. I am still me in some ways , but i am different now, so for me to accept my arthritis properly does that mean a part of them has to too???
Another thing that got me thinking was a friend of mine has been having lots of trouble with her knee, had xrays and MRI, yesterday she went to get the results of her MRI clinging on to the hope it is something to be operated on, only to be told it is OA...Talk about bursting ya bubble...All that hope and desperation that it can be a quick fix , gone in a split second..I remember that feeling like it was yesterday, hoping that i will get an answer to my prayers and have this pain taken away from me...Unfortunately not..I remember when i was told it took a few days to sink in, various emotions going round in my head, thinking wow this is it, i can never be fixed nor cured, this is my life... My attitude was well i can either dwell on it or i can deal with it and move on. So that was me thinking i had accepted my arthritis, but have i, if it still crops up and still gets me down?.
Yesterday i was annoyed that for th 2nd night in a row i couldnt have a bath due to my wrists and my knee swelling up, great one i thought, so i had to sit on my perching stool and have a strip wash, lovely.... not lol..
Then i needed to go downstairs for something, the dog had decided to pee on the carpet, was not impressed. I managed to get the stuff to clean it, but i couldnt bend down to do it because of my knees, i couldnt scrub the floor because of my hands, so i sat down on the sofa, cried and called myself useless, i was peed off. and wanted to tell the world i hate being like this and that sometimes i am not the superwoman i try to make out i am and that i can feel quite lonely at times and no1 close enough to me can fully understand what i feel on a day to day basis.. After having my moment, i just pushed whatever was going on in my head to the back of my mind and went back upstairs and carried on as normal.. Thats what i do best and that is my way of dealing with it. I have 1 person who i talk to about my arthritis and that is becasue she has it too that i know she understands
.My BM tells me that if i dont tell people how it is how can they help, she is right.. but for me that is how i cope and deal with my arthritis, but the fact is i dont think i have accepted my arthritis properly,,,will i ever??? i dont know, i wonder how others deal with theirs??
Its not just about dealing with our arthritis but dealing with everything else that comes with it too.
I have only suffered for 18 months,( not long to some who have had it for many many yrs) but for me my life changed dramatically.
The way i have tried to deal with it is by just keep going, taking one day at a time, but the past few days a few things have happened and all the emotions i push to the back of my head have resurfaced making me think have i really come to terms with my arthritis or am i just ignoring it so i don't have to think about it.??
I don't think i have thought about how much my health has such an impact on my children and partner nor those closest to me. My daughter is 14 and has been learning about how arthritis affects people and complications that can arise etc, My daughter came home in tears, she never understood arthritis properly and now she is scared, she told me she worries about me everyday, that definitely pulled on my heart strings and i just sat there and thought wow this must be really hard for her, and if its this hard for her then how are other people in the family feeling?? What can i do to help?? have no idea..I already try and not show my pain which is hard if you cant move properly or pick things up etc but i have no idea how i can make this easier on those around me, they must be going through there own emotional battle.. Will my smile and my inner strength be enough for them not to worry?? i doubt it.. I am still me in some ways , but i am different now, so for me to accept my arthritis properly does that mean a part of them has to too???
Another thing that got me thinking was a friend of mine has been having lots of trouble with her knee, had xrays and MRI, yesterday she went to get the results of her MRI clinging on to the hope it is something to be operated on, only to be told it is OA...Talk about bursting ya bubble...All that hope and desperation that it can be a quick fix , gone in a split second..I remember that feeling like it was yesterday, hoping that i will get an answer to my prayers and have this pain taken away from me...Unfortunately not..I remember when i was told it took a few days to sink in, various emotions going round in my head, thinking wow this is it, i can never be fixed nor cured, this is my life... My attitude was well i can either dwell on it or i can deal with it and move on. So that was me thinking i had accepted my arthritis, but have i, if it still crops up and still gets me down?.
Yesterday i was annoyed that for th 2nd night in a row i couldnt have a bath due to my wrists and my knee swelling up, great one i thought, so i had to sit on my perching stool and have a strip wash, lovely.... not lol..
Then i needed to go downstairs for something, the dog had decided to pee on the carpet, was not impressed. I managed to get the stuff to clean it, but i couldnt bend down to do it because of my knees, i couldnt scrub the floor because of my hands, so i sat down on the sofa, cried and called myself useless, i was peed off. and wanted to tell the world i hate being like this and that sometimes i am not the superwoman i try to make out i am and that i can feel quite lonely at times and no1 close enough to me can fully understand what i feel on a day to day basis.. After having my moment, i just pushed whatever was going on in my head to the back of my mind and went back upstairs and carried on as normal.. Thats what i do best and that is my way of dealing with it. I have 1 person who i talk to about my arthritis and that is becasue she has it too that i know she understands
.My BM tells me that if i dont tell people how it is how can they help, she is right.. but for me that is how i cope and deal with my arthritis, but the fact is i dont think i have accepted my arthritis properly,,,will i ever??? i dont know, i wonder how others deal with theirs??
Subscribe to:
Posts (Atom)