So, this week a friend posted me a YouTube piece about a documentary called HEAL which is based on the theory of how we can think ourselves better and if labelled sick/chronic illness, do we go by the label rather than how we feel.
This got me thinking about my journey over the past 4 years and do I feel that I have a label and now look for the label to be ‘justified’ or am I looking for how to make my life better and improve the quality of it with the conditions I have.
This then got me thinking about the fact invisible illnesses or complex ones which I feel autoimmune sits under, (as so much research is still needed) how it is seen in the broader sense by people who don’t know about it from friends and family or the wider appeal. Much is still not understood about AI and also in turn this does not give a complete care plan or outcome as many of us on this site know so well. The care plan we are given is a standard and then it twists and turns depending on the medication response and what goes on as we get older, wiser and potentially more AIs come along to join the party.
We then must learn about the side effects of the medication and then weighing this against the effect on the initial diagnosis and making what we feel is the best judgement call on what we want and working with and sometimes against what the professionals feel should happen. It is OK I have learnt to say I don't agree with you, explain more and why or do some research from trusted sites.
I know personally on some occasions I have pushed myself hard when I have been told rest and pacing is the key but maybe this was part of my process in learning what I can achieve and what I can't. I have pushed away certain medications when they have made me so ill, that I felt life was not a bowl of cherries and felt sad (not depressed just sad). I learnt I can still have a sense of humour and bake and be creative, some days to the detriment of my body and others to the benefit of my mental health.
I learnt that no matter how little exercise it is even if a ‘meander round the garden’ is key as is fresh air.
I learnt to keep a diary as bless my consultant who says brain fog is not part of RA. I would beg to differ!
I learnt to tell my hubby on bad days this is a red day, and he knows I am in pain, and I am going to sleep a lot, so you get on with what you need too, just leave me alone but check in if worried.
I learnt there is no point going to A&E unless it is truly a medical emergency as they do not have a clue what to do with autoimmune and as we are already under a consultant, they will just do basic checks and patch us up if needed and send us home with the words ‘speak to your RA team asap’ which is of course Mon to Fri.
I learnt how lucky I was with my GP who supports and works with me on all aspects of my RA so I have a 2-prong attack not just a consultant.
AND finally, I learnt that this forum helps. We have days when we can be, so not in tune with a post and other days, we also get a post and add words to support that person. We also have daft moments and sad moments, but the support is there and with AI you need that. I love seeing posts where someone has managed to achieve a goal or a holiday and just enjoyed it for what it is as you cannot beat that.
So, bring it on 2023 I am in your face!!
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Deeb1764
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Thank you for sharing your learning journey. I'm in the first year and I am having to rethink a lot of what I assumed. I thought that I would be 'on the case' and pushing for the right treatments, tests etc. Instead I feel like a limp lettuce who can't be even be bothered/doesn't want to be 'that' patient. When I was struggling to concentrate at work. thought that I my cognitive functions were still fine but I was being lazy. In a nutshell didn't cut myself any slack for anything that wasn't pain or stiffness which is what RA is right? Problem is that as the dawning realization that the whole systemic nature of RA is a reality, it makes me a little unsettled that other than doing what I can to help myself there is no, sucking it up and carrying on as before. Sorry this sounds a bit negative but that's where I am, in between acknowledgement and acceptance. I'll pick myself up and make the best of it for sure and I have to agree that fresh air and walking when I can are a great supplement to medication. I have 2 dogs that don't let me stay feeling sorry for myself for long 🦮
it’s a hard hard road I spent 6 months whilst trying badly to cope with MTX thinking I was doing ok but my body was screaming at me rest rest rest in a stressful job that also involved being on my feet most of the day.
I hate the fact I am not working and every time been offered a new role my body kicks out another issue so I have had to accept that it’s a no go for now even volunteering as no stability.
As it’s invisible it makes it hard to explain without sounding like a hypochondriac either.
Just let yourself slowly accept what is right road for you we have all had a rant moment or two and days of apathy. Big hugs
Acceptance is the key…..together with adapting your lifestyle to ensure you are helping the drugs you are given, to work. That is not as difficult as it appears at first…but it does need addressing. It’s no good taking XYZ drugs,then tiring yourself out trying to keep up.
Pushing yourself because you think you should is counterproductive….best to work out how to adapt & see how/if it helps. …it’s hard when you have a job & a family to look after….but remember you aren’t the only one who knows how to use the WM,DW or the vacuum.
Being diagnosed with RA does usually lead to a different lifestyle from that which you had previously taken for granted, but I found listening to my rheumy…. sometimes sticking to drugs longer than I wanted to…then finding rheumy was right & they worked …….worked for me.
BUT…..that was before Dr Google & Biologic drugs, which with the arrival of bio similars seem to be available far earlier…so don’t despair…..speak to whoever you deal with in your Rheumy department & ask their advice….that’s one thing a lot of us find hard….we are grown ups after all….we think we should know what to do…. but RA is an unknown quantity for most newly diagnosed.
Good Luck…I hope you turn the corner soon & start to feel better.
Thanks for sharing your RA journey - it is a difficult one and I feel as if I have been on the same path as you. So many people do not understand autoimmune illnesses and put RA in the "old age" box and something you just have to get on with. I am lucky that those closest to me understand (with a little help from me). I have double whammy of RA and MS so have good days, not so good days and really bad days. This forum has provided a lot of help and feels like a caring community. Thanks again
Thanks. I think it typifies most of us. We cope when we can, we get help when we can't but the bottom line is we have our conditions and other people have their's. I have never thought Why me? I always think Why not me? Be positive and keep well. x
I agree. My sister and Mum have systemic autoimmune diseases that are very similar but not classified and understood like RA. While hearing you have RA floors you at first, at least there is a general understanding in the public that it's not a nice thing to have and there is a treatment/monitoring pathway - even if it's not perfect. For mum and sister there is no special name, no treatment pathways, no monitoring and endless high doses of steroids. Strangely, I count myself fortunate that I have anti-CCP and therefore have much better care.
Exactly….we all cope differently and that might be the key……but time brings new treatment & drugs so there is something for everyone.
Everyone has their own version of this horrid disease & all its variants…I was lucky enough to have had that truthfully explained to me by my rheumatologist 20+ years ago……so I learned early on I had to accept & adapt to the fact that it was 99% not going away. We each achieve our goals differently …..but with RA & all the AI friends it throws up…those goals have to be flexible.
I’m in my dotage now, & living proof that there is a good life to be had …even with impaired health. I’m not going to climb Everest…..but pre RA I always hated the cold….so no loss really!
I always preferred the cold NOW since heart issues kicked in hate it. Advancement and research has come a long way and I am on Jaks but much more understanding needed but it will come.
GREAT POST, KNOW EXACTLY WHAT YOU MEAN .I'M SAD TO SAY--I DON'T THINK MOST DOCTORS HAVE A CLUE . THEY MAY SEE A MILLION PATENTS BUT THEY'VE NEVER HAD IT SO THEY HAVE NO IDEA WHAT IT FEELS LIKE AND WHAT THEIR PATENTS GO THROUGH . HAVE GOTTEN VERY FRUSTRATED WITH THEIR RESPONSES AND MATTER OF FACT ANSWERS , NON OF WHICH CHANGE A THING. AND IN ALL FAIRNESS MAYBE THEY CAN'T , BUT WOULD LIKE TO THINK THAT SOME ONE OUT THERE IS INTERESTED , CARES AND IS STILL LOOKING FOR ANSWERS TO THIS DEBILITATING DISEASE. AND I CONSIDER MYSELF ONE OF THE LUCKY ONES, HAVE HAD IT FOR 10 YEARS AND STILL HAVE FLARES BUT CAN USUALLY FUNCTION PRETTY WELL EXCEPTING THOSE PERIODS OF COMPLETE EXHAUSTION WHICH I HATE. I JUST DON'T HAVE THE ENERGY ANY MORE AND TIRE VERY EASILY WHICH IS FRUSTRATING CONSIDERING HOW VERY ACTIVE I ALWAYS WAS. SO EACH DAY I GET UP, PUT ONE FOOT IN FRONT OF THE OTHER AND FORGE ON, NEVER GIVE UP ------MY MOTTO-EVEN IF I DO MOVE LIKE A SNAIL----LOL.
Take each day as it comes , some days my lungs hate me and I hate them the next I can get a few chores done. Its picking which mountain each day I want. Today trying for Everest! iNHALERS TO HAND X
Anyone who has a long term illness has to learn how to manage it themselves. They are the only person there every minute of the day and night. Medical teams can advise, family and friends can sometimes support but you learn that the only person who is there day and night is you. It's important to keep your sense of humour and ability to laugh to mitigate and relieve the constant battle. As someone said 'old age isn't for wimps' and chronic conditions really toughen you up
Yes myself management is key it wont just fall in your lap you have to work hard to achieve it especially in this climate but once you get to know the system and how to make it work for you helps as a well. This site taught me don't sit back and wait PUSH you only have one body and one life x
You can have the best doctors in the world, but unless you accept that you need to contribute full time to lead as good a life as possible….it won’t happen.
Hi Deeb. Good post. RA sucks. The fatigue can be as bad as the pain. I was really scared yesterday. (I have Iritis & Glaucoma with my RA. (Nice package deal). I’ve been having a bad Iritis flare up since the 4th of Feb. So i’m on quite a few eye drops. The vision in my left eye’s been misty since then. Plus deep pain in the eye. But yesterday. I was really scared about how awful my vision was. I have a gorgeous chunky little hamster called Eric. I was running low on his food. Got on the bus & realised i had to go to Moorfields. I felt my vision was getting worse by the minute. Got there at 17.20. The place was packed. I can’t stand the waiting. All the staff are the best. Genuinely caring. A nurse recognised me. (I’ve been going there 30yrs). She said i have ALOT of inflammayltion in the left eye. Was dreading having another injection in the eye. The dr said no. But she gave me a tough regime. (I don’t care as long as there are no needles). I’ve got to put in steroid eye drops every single hr for 2 days, 2 nights. (I stayed up until 5am this morn). Then i had to put maxitrol gel in. Cosopt eye drops every day for a week. Mydrilate 3 times a day for a week. I have to carry on with maxidex hrly during the day for 1 week. Then slowly taper down weekly. It’s so bloody frustrating. But i shouldn’t moan. Some people that have lost their sight would put drops in every minute if it meant they could see!
I got there at 17.20. Was out by 21.00. Which is good going. The first tbing when i got out was get some cream of tomato soup & loads of goodies. Plus some nice areo mousses! I defo believe in treating yourself when you’ve had an emotional day. Good luck everyone! X
A good post Dee, I've always felt acceptance is the answer to making life as best we can. Being an RA Warrior is just such a waste of limited energy, both physical andpsychological, that could be used for something more pleasant.
yep I am no Warrior have not got the strength to lift the sodding shield 😂😂😂However I do what I can to enjoy my day and make it as good as it can be even when I have a mini rant
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