I got my letter from DLA and I have been succesful first time. I have been awarded High rate Mobility and low rate care. It is such a relief to be finally acknowledged that I am disabled and have been for some while. I got my blue badge a month ago, and my bus pass. I am now looking at other things I may be entitled to. Its a shame that at 40 I am at this stage in my life and would prefer to have my old life back, but as they say life begins at 40 I amgoing to try and enjoy what life I do have.
The ongoing encephalitis recovery is still slow, and I have good days and bad days which are similar to the RA days. I had my eyes tested on Tuesday and found the the encephalitis has damaged my eys. My eye pressures are up at the maximum safe level and my eyesight has significantly deteriorated. I kept all my old eye test results since 2008 (sad I know) and have had them tested every year due to the amount of time I spent at a computer. They have never changed during all this time. I now have a pair of glasses being made for me and will be ready next week as I am severly short sighted. I did ask the opthamologist if it could be related to the RA and she said she didn't know. I am going to see a neurologist at the end of july and will take all this information with me so that they can see how much the illness has affected me. As I was only finally diagnosed with RA in February 2012, I am still learning about what has been damaged by that. I have my first proper follow up consult with the Rheumy middle of june so I will get all the extra scan and mri and x ray results then,
My pain levels are increasing and my sleep is getting disturbed again> I toss and turn so much during the night because my shoulders, neck, elbows, back, legs and more bits hurt. Finding that comfy spot is a nightmare.
I was getting a bit depressed with all that has happened in the last 6 months but I can see that life should start to improve soon. For today though I am happy that I have been believed.
Angie, good news on the dla,i am on what your on and i aslo have blue badge and a bus pass. You have had it rough this year haven't you,lets hope that this is a turning point for you and the next few months are brighter for you. I know what you mean ablout getting comfy,i am downstairs as i now have a bag of peas on my knee. I hope i will be able to drift off to sleep sometime soon.
take care sylvi.xx
Well done Angie that's one big hurdle you've made it over so enjoy it please - hopefully it will help make symptoms lessen now as stress doesn't help the conditions much either. TT x
Thank you for your praise. Traceyanne you apply for bus pass through your loacl council or county. I live in kent and got mine through kent county council. All information is available on the web. Have a look at your council website and go from there mine took a week to be sent after I applied. I am off to cornwall saturday and the bumper backpay is a bonus too!
Hi Angie, congratulations on getting your DLA. I get high mobility and middle care and it makes a massive difference to my life, without my motability car I'd be housebound.
Enjoy your weekend away, with the knowledge this battle is over you should have a very happy weekend.
hi angie i have ra too i so understand the sleeping thing..................do you find that youve become more isolated?when i go out with my friends im so tired and in pain that night i find sometimes if i just stay home the pain wont be so bad !but when i pop to the shops having been in bed till lunchtime people say oh you look well ,yes i have a touch of arthtritis too .....not knowing that some days i have to go back to bed after the shop visit..the continous daily pain gets you down eh?peace and love to you.....rhian x
hi rhian, i understand what your saying,it can be lonely thats why this site is so good, its full of really lovely people, who all understand, and they have loads of useful information that can help you , i always try to get up early,as i find it will affect the next nights sleep, also if i can i try to get out, as it makes me feel better seeing other people, it sort of lifts the spirits, and also it keeps some normality in my life, staying in too long for me makes me depressed,[ even if it does take me ages to get to where i,m going] so i hope this has helped you a little bit, take care, sue x
Rhian, I do feel a bit isolated. Not one of my so called friends has been to visit. I've read previous posts and it seems we get avoided by people who could make a difference. We've all heard people say "oh my nan had that" etc and I just tut. I tell them its an autoimmune disease rather than RA as it doesn't get the same stupid reply! My family are great and have had to step up as they can see I just can't do it. I've always been independent and would always do it myself. I give lots of praise and thankyou's when they do help. I too am a morning person as I'm too bleedin knackered by the afternoon. I don't go out in the evenings as I'm usually in my pj's by 5pm! I don't miss the going out during the evening but I would miss going out during the day.
hi Angie thanks for ur message !keep in touch ok!I am in my pj s by bt 6 at latest ...close doors...see you all tomorrow......the pain if I do too much is .well one day I thought \i was dying Ha !you got to laugh eh ..we got this for ever ....but we have to plod on there,s no other way I am off meds ..but I think I m worse ....my rheumy (as I call her !no Im not American Im Welsh!wants me to go back on Methotrexate .........I don,t know ................I end up most nights having a few glasses of wine and \i do feel better..........keep in touch Rhianx
hie warrior. tell me again about the sleepless nights. with me i have sleepless nights due to pain and discomfort. imagine i have a nine and two year old with me so i have to wake up. the morning is full of stiffness, pain lack of interest and tiredness. can you believe am am always tired. i am sick and tired of saying am tired. i get ashamed as the people who are around me dont have the condition. one day a friend commented, (you are always tired what do you do? yet you dont have a firm that you go to). that made me feel so bad because she knows my problems. since then, whenever anybody ask me how am feeling, my anwer is OK.
I will definatley look into joining and meeting fellow sufferers. I've actually had an awful day today with severe pains in shoulder blade and back all day. I've had a hot shower, taken tramadol and put pain gel on and its still hurting. Usually me left side is the worst but today its all on the right. Hands and shoulders are sore too. I need to pack but I'm in too much pain and now I'm getting annoyed with myself for not being able to do what I want. Think I'm better off going to bed to sleep and just getting up early to get cracked on with it. Do you go to the group meetings?
So glad you didn't have trouble with the DLA. Hopefully that's a good sign and everything will be on upward path now, and you're recovery from the encephalitis will speed up, and RA get under control. So enjoy life after 40 as much as you can. Pollyx
Thank you all for your great responses. This site is a godsend and allows us to rant and spread good chear and support fellow sufferers. I love getting my daily update to see how everyone is. You find that the information learnt on here far outways anything else you would find on the web but this site has the personal touch.
My twins have Jubilee celebrations at school tomorrow so my hubby is making sandwiches and cakes for them to take in. I'm lounging around as my shoulder blade and right side of me has been hurting all day. Nothing I do is making it go away.
Have a fab weekend one and all and enjoy as best you can. I will be reading post while away - speak to you when I get back saturday week. Xxx
congratulation for your battle. atleast you tried to do the application unlike others who feel shy. am so happy for you. enjoy yourself but dont forget to take your meds out of the excitment.xxxx
I agree that everyone should apply. If you have a diagnosis, take meds for it and have daily pain and limitations then go for it. I used the NRAS advice book to make sure I got the right words. My family check my pill mate to see if I've taken my meds. I would forget - usually I've fallen asleep so they wake me to take them.
Hi Angie yes I started going two months ago and have found it quite good it gives you a chance to meet people with the same probs and you can escape from family and moan without being judged and get some ideas.I will be going t o the next one if you feel OK come along Chris
I remember getting info about it but as memory is poor - when is it? Can you pm me details with location. I tried to go to the previous one but I was too ill. My hubby wants to come so he can ask questions to find out more is that ok?
Congratulations on getting your DLA. I'm new to this site but i have been diagnosed with RA for 18 years (27 yrs old when first diagnosed) just woke up one morning with severe pains in my fingers and then feet. I too receive DLA high rate mobility and middle rate care, i still work part time and also receive Disability element of Tax Credit as i am a single mum and i also claimed carers allowance for my son who is my carer. I advise everyone to seek help from their local CAB and read the Government website on benefits for disability. My work place have had to put things in place for me and adjust my working hours to suit me and have arranged that i can have time off for my flare ups as RA is covered under the Disability Act. It took me a long time to accept i had RA and even longer to apply for benefits etc but now i don't hesitate in applying, this extra help has made life less stressful so i can concentrate on my health. Apart from the symptoms of RA the one thing that gets me down is people's perception of RA, "oh yes i have a bad knee, i know how you feel" and "my god you are always tired" at one time i used to just nod to people and feel ashamed that i had been for another rest but now i tell them straight what RA is and i certainly don't feel bad for having plenty of rest, it's only my health that suffers if i don't. Good luck to everyone and sorry if i have gone on but it has felt good to talk to people who understand what's going on.
Welcome to the group. Everyone has a story about how their RA affects their lives and it does help others to relate when you blog on here. We've all had stupid people tell us that they have an elderly relative with a dodgy knee. The thing that stands out is the pain spreads and can be in a different place throughout the day. The fatigue is overwhelming. When it creeps up on me the only thing I can do is go with the flow and sleep. I'm on sick leave at the moment due to getting Encephalitis recently. I actually can't see how I can return to work when my head and my body hurt daily and I'm so exhausted all the time.
I think as a single mum you are doing a great job of balancing your life of being a working mum with RA. Make sure you put you first some times and not last. Its so easy to do and I am guilty of it too. Cyber hugs to you.
Hi, just mulling through past comments and came across your success with dla. Can you give me any advice please. Have tried once before and was refused. Since then my knees are suffering too and I can walk but sometimes with pain and a feeling that knees will give way but up to now they have not. I work full time at a desk job, but finding minute taking more and more difficult. I drive but today the pain in my knee was making it difficult, and my hands feel like they have been trapped in a door. Is it possible to be refused because. Have not taken time off work, or because I work? Have had times when feel so tired just want sleep, this comes over me like a wave, even when I'm busy and I lose concentration too.
Hi Debs. Get the DLA book from NRAS as it has useful phraeseology to use when applying. Check to see if there are any Welfare Benefit Advisors locally (CAB, etc). The council may have an advisor who could help. NRAS helpline could help too. I know what you mean by the need to sleep. I used to drive home too exhausted to change gear and went straight to bed the moment I got in. As long as you have a consultant, and take meds, there is no reason why you can't apply for DLA - just make sure you word it correctly. If they turn you down, appeal. Missmop is going through an appeal so have a look at her blogs. I hope I've been of some help to you.
When you fill in the forms complete has though it is the worst day you can have, don't put that you can manage, imagine you don't have any aids. My best advice is attend your local CAB and if you are having bad days you can request a home visit but tell them what you are like on bad days, when they ask how often you get bad days tell them you cannot give an accurate answer to that due to the nature of the condition. With work have you told your employer you have RA, they should be offering you a work place assessment through Occy health, tell them you suffer while taking minutes they should provide equipment to help with this or ask someone else to do this. Ring NRAS and ask for the leaflets on work, they really helped me. I also went on the CAB website and found out my rights as this condition is covered under the Equality Act as it is recognised as a disability therefore they are by law required to put things in place to help you in the work place. Do not suffer in silence tell them and ask them to make you an appt with Occy Health. Hope this helps.
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