JIA and my future. Shared this on young peoples community, thought i would share it here

maylavergaracunliffe

Hello everyone, i was diagnosed with JIA when i was 2 in my knees and then following steroid injections and physiotherapy i was put into remission when i was 7.

Then after not having any pain (i did swimming for this period of time) i started playing football which then i would have some flare ups in my knees and hips but it was recurring quite frequently so i stopped but didn't really have to have pain management it was just annoying.

Had no pain for a bit and then in year 10 when mocks were starting i had pain in my hands to which i still have. I went to the doctors to get reassessed but they said there is nothing apart from 'mechanical pains' (i have double jointed fingers) as they said i didn't have much swelling and they didn't see the RF factor or others in my bloods.

(Also when i was 7 i moved from London to Nottingham so i did have different consultants and in addition my Great uncle has Rheumatoid arthritis and my mums side is osteo but particularly my mum got it when she was quite young, below 30, although she did do volleyball when she was younger - she never officially got a diagnosis but has pretty bad swelling and pain)

I primarily managed with ibuprofen which helped until my year 12 exams where the pain got really bad where it wasn't working anymore and was struggling to write at all and was prescribed naproxen which saved my mock grades and helped significantly. I didn’t want to get reassessed as i thought i would just get given the same answer. I do expect to go back to the GP and get prescribed more closer to winter time as my pain gets significantly worse in the cold and i have more exams.

So thats my history but i have a couple things to discuss as i just feel kinda alone, even my mum doesn't really understand:

Transitioning to university. I am going into year 13 and want to go into medicine. (Any advice if there is anybody that sat the UCAT with pain in their hands is appreciated, i was stupid and didnt get the access arrangements so have no rest breaks)

Firstly i want to apply for DSA but because of my remissions statement and not fully documented flare ups how should i go about providing evidence, ive heard i can get my GP to sign off on a document. In addition i stuggle to 'identify/clarify' what my 'disability/problem' is now as i am in remission and when i was first diagnosed it was only in my knees but, now it is less so in my knees apart from when i physically exert myself and, now mainly in my hands. Also i have rest breaks for exams, i didn't like using a laptop.

Secondly, i want to know if there is anybody out their in a profession that uses their hands quite technically and how you manage pain or get around things because i am just thinking in the long term that my hands will get worse and may develop into other arthritis, i have thought about going into teaching at uni level if it gets this bad though.

Thirdly, I have also find myself having a problem where when applying to jobs i put no disability rather than anything as i just feel like as i am technically in remission nobody would 'believe/listen' to me and/or i feel like compared to other people's stories with having these extreme medications that my pain is 'not that bad' and with having limited experience only working in charity shop i feel that if i select that box people will look past my application as it is easier to train a person with no disability especially since mine is physical.

In addition, im confused, i don't understand what my pain is from whether it is flare ups (this one has been going on for almost two years going up and down in pain level for my hands) or that its chronic pain because i get pain in most joints like: wrists, fingers, knees, hips, elbows but only experience swelling or that hot pain feel in specific ones e.g. my thumb or finger joints and occasionally in my knee. I also stuggle to say i have JIA as the term 'remission' to me has always been relayed to me as its gone, so do i still have it or not, is it just dormant etc.

Also, i understand that movement and exercise is important not to be stiff etc but i just feel tired all the time. Between revision and my naps i just find i have no time to do anything and especially if i will get a part time job, and its not even just the amount of sleep im getting. I average around 6 during the school year (but when i get home probably nap around 2-3 hours, longest i have slept is 14 hours) and 9 on holidays, but it is my energy levels too. At school i fell asleep for even just five minutes in the same lessons for every lesson and i can fall asleep very easily almost anywhere. So if there is any changes to my diets or nutrients that you think could help, this would be appreciated.

Anyway if you have made this far i appreciate you reading. Having anybody to talk to is a comfort. Thanks.

Also just wanted to add i am slowly having pain with more mundane things now like brushing my teeth and hair and it has just become really disheartening and disencouraging.