I'm new here and starting off with a moan, sorry. I thought you might understand where I was coming from. I'm 26, diagnosed with RA two years ago about a year after I first started getting pain but I was always tired before that. Pain is now pretty much under control so my nurse has said they won't be looking to change my meds as I'm on the highest dose I can have of hydroxychloroquine and methotrexate and I'm pretty stable. But the fatigue is driving me insane. And it's true the pain and swelling don't happen very often now, that is until I do something out of the ordinary and then I suffer for it.
I started a Master's degree in February and I can do the work but I'm struggling with the pace of it. I'm thinking of quitting it which is so unlike me but I can't take the constant spiraling into fatigue and depression because I can't keep up.
I can't see how this Master's degree will be much use anyway. I thought maybe I'd go for a different job in the future but that's unrealistic, I couldn't keep up with being employed somewhere. I am self-employed and that seems to work ok but the RA does interfere with it a bit. I thought about developing another part time job on the side but I'm crippled with 'what's the point'.
I'm in a really low place. Also cut back on a voluntary commitment that is very dear to me because I just can't do it. Not sure what to do. Not sure what I want. Having some counselling in September but in the mean time I just feel utterly useless. I can't see that this is ever going to get any better. Rest of life not so great either, live with parents, supporting them where I can around house, financially (when I have any money to spare) and with caring role - Dad's had terminal cancer for 10 years and could be ill for years yet. Can't see through this right now.
Thanks for listening x
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ducklingpond
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My name is Karen and I'm fairly new to this site. I know exactly what you are feeling , and you will find many here on this site , can share your feelings of depression and a Lo mood. Depression is very common with R D.
Welcome to this site and you will find lots of lovely and careing people to give you support.
Everyone here is allowed to have a moan or two , and vent ......I have found.
I was diagnosed just over a year ago , with aggressive RD. My life has changed in so many ways .....I don't know what's ahead (none of us do ) .... I'm just trying not to worry too much , if I can . Trying to take one day at a time . That's very hard to do some days .
It is great that you are stable and your pain is well controlled ! 👍👍👍
I'm just starting to really realise that it can be quite a lonely disease......most people have absolutely no idea what we are going through , but , it does help to be on a forum like this , to get support and understanding from people who are going through the same or similar things.
Thank you for your kind and welcoming reply *hugs back*. Yes, I think I do get to worrying too much about the future and had a bit of a melt down yesterday. It's comforting to know that we're not alone on here.
Have you spoken to your uni to see if you can adapt the pace of your course, maybe do it part time for a while until you feel better? I have also had this for 2 years and struggle a lot with fatigue, I have found the only way to cope is to rest on the bad days (even though it drives me crazy that I can't do everything I want to do!) I have had to adjust how I work but it has helped hugely. This is a condition you need to learn to live with I think, the drugs do a lot but you have to accept a new normal. You sound really low, If you can, try not to make any big decisions while you are in a really low place. It might be worth chatting to your GP about your low mood, they may be able to offer help.
You sound like you are putting yourself under a lot of pressure, remember to be kind to yourself.
Thanks so much for your reply *Hugs back*. The course I'm doing is a part-time one with the OU but they still expect 20 hours a week study... which doesn't feel very part time. And the way it's organised doesn't give you room for the odd week or two of feeling ill without falling behind on the reading.
You're right about not making decisions when you feel low. I will try and hang on a bit. I've got another appointment with GP in a couple of weeks, so will see if some blood tests they've done show anything else that's feeding into this.
You poor thing, yes one of the hardest things is this enforced learning curve of a new pace of life (I'm very early stages). Yes there are wee benefits of changing pace but it's like a whole additional thing to learn on top of everything else, it can be a vicious circle. I know how you feel, I also had to put a volunteering post on hold recently and was gutted because I'd gone to a lot of effort to compress my hours at work to make it happen. I felt exhilarated I had managed to tweak my working week to fit in something I really enjoyed and then, oh joy, arthritis Just barged right in - eugh!!! Last night I happened to read an interesting article on the complex nature of fatigue arthritisresearchuk.org/~/m....
I quite like page 7 cause it's a wee checklist of things I can try to focus on. Before my pain reduced significantly last week I was in that vicious circle of skipping meals and not sleeping properly etc cause my wrists were too painful and crunchy. Now the pain has subsided I'm able to do more but it absolutely knackers me. I reckon it takes a lot time to figure out a sort of routine to deal with the fatigue but we'll all get there together.
Hugs, hugs, hugs! Good luck keep us posted how you're doing.
Ach, sorry that link doesn't seem to work. I found it by googling 'arthritis fatigue management' and a few search results down it's a PDF doc called 'Fatigue and Arthritis' on arthritisresearchuk.org I'm printing out page 7 and sticking it on a wall lol.
Thanks so much for your kind reply. *Hugs back*. Glad to hear your pain has subsided recently, that must be a relief.
Yes, I think changing pace requires a good deal of changing expectations as well and that's maybe the bit I'm struggling with. I worked so hard to get to this point and literally made myself ill, and now I can't make the most of it. So frustrating.
Thanks for the article reference, I've found it and it is a good little booklet. The search terms you gave me brought up some other interesting pages too, thank you.
I'm sorry you are feeling so low. Adapting to this disease is hard. I did my masters years ago and the thought of doing it now is beyond me! Having said that, I do do things now- just have to use technology that suits you and rest limbs in between. I have a touch screen- easier on fingers and wrists and use speech technology ( get a good one. I tried to speak an essay and it kept getting it wrong. Swear words it managed;-)) you can also apply for a disabled student grant-they'll assess you and both advise on and pay for technology needed. They'll also suggest extra time, flexibility around deadlines etc. Take care- battle on ( by resting and being kind to yourself!)
Thanks so much for your reply. The Master's seemed like a good idea at the time but the reality of it not so much. I've actually managed to read a paper I've been trying to get round to for two weeks today which has given me a boost.
Thanks for the advice about tech aids. Haha, I can believe it managed the swear words technology is a pain but it knows what it's doing really. I haven't asked for any extensions yet as I always leave it til the desperation kicks in about 2 days before the deadline. The way this course is structured doesn't really give much breathing room for extensions as its straight from one assignment to the next, quite different to my undergraduate where we just basically had essays to hand in at the end of term (which suited me a lot better than this). I've decided to aim for the 40% pass rather than anything more, take the pressure off if I can though it doesn't help the motivation much.
Thanks again, I hope you are getting on ok at the moment, sounds like you've had a rough week too.
Hi!! I have been in a similar position. I have been struggling for a while with completing my masters, mostly due to meds changing, side effects and struggling with the brain fog! In some ways the pain, without meds, was easier to deal with. I too have an intensive caring role. Not the best context for studying. I applied for a leave of absence a few months ago, which has been a God send, and made conscious decision not to give myself a hard time about it (a difficult thing to do). It is so hard to plough on when not feeling up to it. Now, after some rest, I am feeling more on track again and hoping to pick it up again in September. Self care and compassion is the best gift we can give ourselves. It might be worth considering a break to help you get through it, but also look after yourself in the process.
Wishing you the very best of luck and hope it all works out for you. It sounds like you have achieved a great deal already. Xx
Hi Gowp, thanks so much for your reply. I completely agree with you about the pain in some ways being easier than the brain fog and fatigue. I'm lucky that my meds are quite stable now, but I do feel for you, thinking about how rough it was when I came off prednisolone.
I'm really glad the leave of absence has been what you needed - it's not an easy decision to make with something like that which is such a big important commitment. I went on leave from my voluntary role very reluctantly, and had to ask them to find someone else to do because I just have nothing left for it right now. I'm still seeing how I go with the Master's - one minute I want to quit it completely, the next I'm doing ok with it. Talk about a rollercoaster!
Thank you again. Wishing you all the very best as well xxx
Update: Went to GP this morning to review some blood tests and turns out I have a vitamin D deficiency, oh dear I really need to get out more. Apparently this deficiency comes with its own bundle of fatigue, brain fog, joint pain, depression.... which would explain a lot! I find I always feel relief to know something is separate to the RA. Thanks again everyone xxx
Sorry for all you are facing. Talk to your doctor about biologics....especially because you are so young. Best to you.
Oh, hun, you are burning the candle at both ends. Something has got to give. You are under sooo much pressure at such a young age. Please take a breath, give yourself a pat on the back and realize that you are a wonderful caring person....If you are unable to admit this, then I will for you.
Looking after a parent stricken with cancer is hard. How do I know?...I lived it. Please feel free to PM me if you want to chat or just vent, because no one can understand how hard it is looking after a sickly parent.
If you are able to finish your masters, then finish it...but if you need to put your masters on hold, then do it. Does it really matter if it takes you longer to get your masters? This is your life & you are so young. There is nothing wrong with taking time for youself. You have a long life ahead of you.
I will tell you what I say to my 25 yr old son. "Spread your wings & fly! Fly baby fly...be good to yourself & Fly"
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keep us posted how you're doing.
technology is a pain but it knows what it's doing really. I haven't asked for any extensions yet as I always leave it til the desperation kicks in about 2 days before the deadline. The way this course is structured doesn't really give much breathing room for extensions as its straight from one assignment to the next, quite different to my undergraduate where we just basically had essays to hand in at the end of term (which suited me a lot better than this). I've decided to aim for the 40% pass rather than anything more, take the pressure off if I can though it doesn't help the motivation much.
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