Where I was then and where I am now :)

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 :-)

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.

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..

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.

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...

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.

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..             
                                                                                                                                                                                     

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....

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...

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...

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:

• 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