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..

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...

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.

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.

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...

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..

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.

• 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

He has told me to increase my gabapentin if and when needed. Wants me to increase my amitriptyline by 10mg so i shall now be on 35mg.
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'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..

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

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??

10 Positive things about Arthritis

We always seem to think of the negatives of Arthritis, that is understandable with everything we as sufferers experience....

I thought I would share with you my top ten of "Positive things about Arthritis" (in no particular order)

• Now i have arthritis i understand and can sympathise with everyone who suffers with this ghastly disease, before i thought it was just aches and pains and occasional stiffness, how wrong was i lol, if only it was that easy eh?? Me learning and still learning enables me to help and support others where need be and for me to understand my condition as best as i can..
• I have come across some lovely people through talking about Arthritis, they have been a great support for me, without them i would defffinately not be smiling lol
• I now fully understand what is important in life. Now i know i am unable to carry on with my dreams my sole attention,energy is focused on those closest around me, my children and family..
• I have learnt not to take things for granted..There have been small and normal things that i could do before arthritis without even thinking it would ever be a problem, such as brushing teeth, getting dressed, doing my hair, getting in and out of bath,making a cup of tea etc Now i am grateful for everything i can do and it makes it easier for me to accept when i am unable to do so..
• Finding out who my true friends are, The ones that care and have time for me, i make sure i have time for them, everyone else can sod off to put it politely lol. Its the ones that matter who are important.
• Learning not too worry about what people think of me. When i first had to go out with my crutches or sticks, i was embarassed by what others may think or say whispering to someone else, now i realise if it helps me then thats the important thing, what everyone else thinks is irrelevant. I went out the weekend with a 3 wheeled walker with shopping bag attached, my partner was at work and i needed some bits from the shop, i was a bit dubious at first, but then i thought sod it, i need it, it helps me and will be really beneficial so i am just going to do it, and i did and i had no funny looks or any comments, it was great and a boost i needed.
• I have found that there are some very kind people and have had my faith restored in human nature, i have had alot of strangers help and offer to help more so than i ever would think, and that is great to find out that people do have a heart lol
• My partner has become Mr mop lol, he is now a natural at cooking, cleaning and making lush cups of tea. all without any guidance from me, i knew he had a hidden talent lmao.
• Staying tucked up in the warmth when it is cold outside.
• Spending more time with my children, 

Dont feel too bad this morning

This morning i woke and was able to get up and out of bed without too much trouble. The kids were back at school so there was no chance of a 10 and half hrs sleep like yesterday lol..
Once i have woken and walk about a bit i normally know what is ache, pain or niggling joint is going to be joining me for the day..
My back is still throbbing,heavy and achy. but not as bad as it has been, my hips are no longer clicking when i walk so that is an added bonus lol.. My wrists and fingers do not feel great(they haven't for a long time lol) and my right knee is dropping a few sharp digs in there, obviously been feeling a bit left out lately lol..Fingers are still stiff this morning although i been awake for 2 hours..Looks like a soak in some warm water and pretend i am playing the piano for a bit, get them moving properly again...
Other than that i feeling ok so far this morning, lets see what the rest of the day brings.

Am yo yo-ing again..

After my good run and then going downhill again i have since felt myself getting a bit better, and even managed to go out on thursday, which was great, so glad i pushed myself to go and i went, but again it has knocked me about and my backs and hips are in full motion of making my life difficult again.. oh the joys of arther..
This pain and achyness in my back is really grinding my gears, It makes life so awkward, getting about and doing things is such a mission..I walk and my back feels like it twists,grinds and screeches lol..
Sitting on my bum can get a bit tedious at times, but what choice do i?? not alot eh??
As i said before my laptop is my new best friend lol, it is who i spend most of my time with, it is who i share all my feelings and emotions with and it is who i talk with and cry with and to occupy myself with. where would i be without my laptop, ?? climbing the walls?? i wish lol..
My plans for the day are to sit on the sofa surrounded by cushions and hot water bottles, staying topped up on meds and be with my new best friend lol..What else can i do????

The good days never last as long as we'd like

I noticed that i only tend to write when things are bad, i suppose this is not good if i am supposed to be assuring others with this ghastly disease that things arent always bad..
Too be honest it is not always bad. For about 4 and half days i was good, good meaning i was able to walk and go out the house and up town with the kids , which for me is a luxury. Them days i was good i maybe should have posted to say i was having a good day, but if i am honest i was too busy enjoying my good day to have time to be sat on my laptop lol..
Come saturday after another trip up town with my son to the library i could feel the tension creep in my body, my hips and back were gnawing and throbbing.. by the time i got home i was a moody cow and was snapping at my other half, he hadnt done nowt but i was hurting and annoyed that after only a few days of being able to walk it was coming to its end....
Sunday and monday things were pretty much the same i knew i was to stay in the house and pretty much do sod all for fear of aggravating the situation...But being a woman and if i am able to do things i will i decided to tidy the house and wash and dry bed linen obviously with tea and tablet breaks in between, as you can imagine it took me the best part of all day and was pretty worn out at the end of it..
Well  yesterday, bloody valentines day i woke and i was very stiff and sore, i got out of bed to stand and the pain was excrutiating in my hips and back area..great one i thought.. i knew my day was going to be very limited..I felt shite, completely shite, my plans for valentines day was ruined..I wanted to get dressed up, put me face on do me hair and make a special effort, .. i was in no mood for loving just crying lol.
I managed to get dressed this was probably about 2 pm.. lol Walking was a nightmare and had to use crutches in house which i hate as i cant bloody hold anything..
I was wound up as i couldnt do anything myself ie housework etc, i had to ask the kids and even that caused problems which wound me up even more, got me more frustrated that i couldnt do what i wanted....
I could feel the frustration inside along with the pain, i felt like i wanted someone to squeeze my hips and back tightly to squash all that pain that was trying to get out...that would have probably broken my back lol, but that was what i wanted..
To top it off i had a letter from DLA saying that i was not entitled to it.. The reasons they listed as to why was not what i said on form..At the moment i am not feeling the fight to appeal as i still not great today, but once i have my fighting spirit back i shall be appealing with a little help form my friend..
Scott came home and i was trying my hardest to make out i was ok(think the sticks gave it away lol) he was annoyed about DLA and was tired form work , plius he had to go shop and cook dinner and tidy up.. i felt for him and was annoyed with myself that i was put in the position of being so limited to what i can do..
I didi have a few episodes of tears yesterday, short bursts of anger, frustratio and pain..
Today i am feeling a bit better, not so painful as yesterday, but am still very limited as to what i can and cant do, but better than yesterday so thats an improvement...

A productive day

Today i had a 20 min appointment booked with my GP.This was so i could discuss a letter for my ESA appeal, and how things are currently going for me..

I explained about everything that was going on with ESA, my cab advisor and the letter regarding the £120 charge, she asked me what the cab advisor needed, said i wasnt 100% sure but that he had sent a letter explaining,she could not find the letter on the system, but  said she thought it would ask what health problems i have, how it affects me and my limitations. she would discuss the situation with the surgery manager and providing there wasnt any problems she would send a letter to my cab advisor stating the information required..The letter will be a great help in supporting my appeal

Talked about my flares and how they are becoming closer together and she believes it may be time for me to try an alternative disease modifying drug and has agreed she would refer me to a new rheumy who is also closer to me.. yippee lol, she is also  sending a copy of  my pain map explaining the reason for referral, she said it could take a while but it would be sooner than my original appointment set for november..lol

I asked wether this is how i am going to be now for rest of my life taking all theses pills and being a yo yo in regards to pain and emotions..? She said she was sorry to say but yes, its her job as my doctor  to help control my pain and it will be a rheumatologist job to control the arthritis..

I asked if i was to have an accurate diagnosis of knowing exactly what type of inflammatory arthritis i had, would it help with  improving my condition,? she said no as all inflammatory arthritis's are treated with the same kind of meds..

She has taken me off diclo and put me on 500mg naproxen twice a day, apperently it is used specifically for inflammatory arthritis and osteo,  why didnt they put me on it sooner ?lol..

Regarding all my weird goings on with me legs and twitching etc she said it was my nerves and it may be that they know it is a nerve problem but are unable to find out exactly what it  is but it can be treated with nerve tablets to keep it under control.. i am to continue on the dose i am on for next few weeks and if it is still a problem she wants me to go back..

So all in all a productive day and a positive step forward..

My body has a mind of its own

Today has been a bit of a weird day with weird things going on.
After increasing my gabapentin my leg is feeling a lot better than yesterday, I still know its there but it is in the background, I can also feel it on my other leg now.
I am also experiencing lots of twitching sometimes it can be quite a jolt. I have experienced twitching before, but not like this. . It is mainly in my legs but has been elsewhere too. Also had the numbness in my fingers again. .
I don't feel great about it and if i'm honest am a bit freaked out. I have doctors monday and neurologist march. .
Tablets have made me feel bit spaced out not in good way either lol. .
Will see how I go the next few days, and hope it just a one off occurance lol.

Feeling rather peculiar

For 2 days i have had what i can only describe as a dead leg with sharp pains running from back of thigh to my feet.
It is constant, and not easing up at all, not at the moment anyway..Having a dead leg for 2 days is taking its toll and doing my nut in..
Along with my dead leg my back and hips are throbbing and painful too, and i just feel weird,peculiar odd~?? am weak, aching, uncomfortable...maybe its because it is a new pain something i not used too.
Went to doctors to get it checked out as i was wooried about deep vein thrombosis and didn't know if any of my tablets could be the cause..Anyway explained all my symptoms to doc and she said it is nerve related. As i am under neurologist(who i seeing march) she was reluctant to give me anything else..So instead has told me to increase gabapentin over the next few days and see how i feel, akso to increase amitriptyline too..
Doc said i could be like this for weeks.. great one..I hope not, its driving me mad now.. or is it going to be another one of them things we have to get used too..
Fingers crossed that the increase will help..

Flowers made my day

Am so relieved to wake this morning feeling better.
The only problem i really had was i woke up on my back and was stiff as a board, tried to do slow swaying movements and after a while was able to lift myself up using bed rail..
So the only niggling thing really is just a minimal niggle of knee,back and hips, so aslong as i don't over do it i should be ok as ok can be woo hoo, i feel a big smile coming on lol..
In fact i did have a big smile on my face this morning, Scott went out to do the weekly shop and came back with a lovely bunch of flowers for me, which really touched me and made me realise that over the last few days when things have been bad for me he has noticed and the flowers were his waay of cheering me up..So the flowers touched me and set me up for the day..Thanks babe..

Admitting defeat

Sleep was disturbed due to pain in knee so it is no surprise i have woken feeling like i haven't slept again..
My back and hips are not too bad at the moment, but i think that is due to the fact i haven't moved around much due to my knee..
Am having to cancel an appointment today as i am unable to get there due to the pain and being so uncomfortable, am really hacked off at how arther has a hold over me at times and stops me from doing things. We often say we will not let it get us down and stop us in our tracks but sometimes we have to admit defeat, and today is one of those days unfortunately.
Looks like my day will be a day of sitting on my bum with legs up, what a great day i have in store eh??rest rest and more bloody rest..Thanks Arther

Now something else joined in the flare

By this afternoon I did feel better but not great. I knew I needed to go take my daughter out and use crutches but was wondering how cause of my hands. . I had no choice but to do it though. . My back and hips were aching with sharp uncomfortable pains every now and again, and my right knee was beginning to throb. . I was feeling pain in wrists and shoulders while walking, was hard work and had to stop a few times.
On the way home I started feeling really weak and heavy, although it was cold I was feeling different kind of cold. . When I got in I wanted to cry. . I ran a bath, I needed to get warm and feel the warmth on my joints. . By the time I got in to bed my right knee was so painful, feeling like the pain was trying to breakthrough. . My back and hips playing up to. .
So yep I feel crap and even had a wee cry. . Things have settled a bit now so hoping I manage to get some kip. .