Living with chronic illness: I thought people might... - PMRGCAuk

PMRGCAuk

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Living with chronic illness

PMRpro profile image
PMRproAmbassador

I thought people might like to read this - from a journalist who specialises in chronic illness and disability issues. She knows whereof she speaks ...

Bits I'm not sure I agree with entirely - diet can be more important than she thinks with some illnesses for example. It doesn't cure the fatigue but it is something you can control when everything else runs away from you...

theguardian.com/lifeandstyl...

76 Replies

Thanks for sharing. Very recognisable and comforting.

Wonderful! I found myself teary reading this. It really hit home.

Thanks for this article. However it’s depressing looking at the pictures of people who look SO healthy when one is always feeling so ill and seriously debilitated.... sorry.I have had my 1st AstraZeneca vaccine a week ago... side effects were: more tiredness than before for a few days, feeling spaced out and very dizzy, I could hardly stand up the day after. I drank lots of water...

Not thrilled to have had AstraZeneca but no choice. Let’s hope it will help... so second vaccine in 12 weeks following the first.

PMRpro profile image
PMRproAmbassador in reply to JGBH

It is a very general article. We don't all look ill or even feel terribly unwell - I don't think I feel particularly ILL most of the time but aging isn't adding to what I can do!

Kendrew profile image
Kendrew in reply to JGBH

I think that's partly some of the problem.......many of us look very well to other people, when in fact we're feeling very unwell. Like some of the others.....I don't ever feel 100% fit, but I do have periods of time when I feel ok. When I feel unwell though it is pretty grim. I now know though that these times when I'm unwell won't last forever and will be punctuated with periods of feeling ok so I try to feel grateful for those small mercies. I know it's not easy though.

JGBH profile image
JGBH in reply to Kendrew

Agree. However I haven’t been able to do anything at all for months now and getting worse. Can barely walk, can’t use my hands, so eating, showering, peeling vegetables etc are difficult to do... and pain is incredible. So it’s difficult to keep positive. Have started a new treatment for RA, Tocilizumab weekly injections, so hope it will eventually work and pain and inflammation can be controlled and I can regain some mobility.... and some freedom and life. Trapped in my body and my house alone so pretty grim. Hope you will keep on feeling better.

Kendrew profile image
Kendrew in reply to JGBH

I'm so sorry to hear that. Your daily challenges are so much more debilitating than mine and I can't imagine how hard it must be to try and stay positive and upbeat with so much going on healthwise. Living with constant pain makes daily life even harder too so I'm full of admiration and respect for you and the way you clearly get through everything you have to endure. I hope the injections afford some significant pain relief and this then at least will be one less thing to trouble you.

Wishing you all the best. ❤

JGBH profile image
JGBH in reply to Kendrew

Thank you for your kind words and support. I am aware I am not the only one living like this.... I don’t want pity but it’s difficult to imagine how one’s health can be so difficult to manage and the impact it has on one when it becomes so hard to cope. I want to cope in my own home, have always been so independent and always getting on with things. Unfortunately my small family live in London and the south of east so quite a distance from me and can’t just pop round to have a chat in the garden, plus there’s the risk of bringing Covid to me.... Luckily there’s Skype and video chats which is wonderful but still hard once we say bye.

Best wishes to you.

Frewen1 profile image
Frewen1 in reply to JGBH

Sending you thoughtful sympathy. I have no right to grumble at my weakness and jelly limbs, puffy face and weight gain. I don’t have the pain that you have, and can walk regularly (even though leaking permanently and constantly, and taking all the other drugs for all the other problems caused by steroids).. I wish you improvement. X

JGBH profile image
JGBH in reply to Frewen1

You have every right to grumble because you are suffering so many nasty symptoms which are part of your everyday life. It’s debilitating, it’s tough. We ALL suffer and everyone’s pain matters. This forum is so good in giving invaluable information and tips but also much needed support. We all need this support, no one more than the other.Thank you for your kind thoughts and I wish you the very best.

Greensleeves profile image
Greensleeves in reply to JGBH

So sorry to read you’re in so much pain. I do hope the new treatment helps you . Big hugs to you

JGBH profile image
JGBH in reply to Greensleeves

Thank you for your kindness and support. We all have to cope with so much pain and disability. I am not the only one suffering. Indeed I so hope this new treatment will help but it’s difficult keeping positive at times.Best wishes to you.

Have just checked your profile and noticed you had covid.... how dreadful. Hope you have fully recovered now.

It must have been rather scary and frightening .

Sending hugs back to you.💐

Greensleeves profile image
Greensleeves in reply to JGBH

Thank you JG , my poor Mum is in a nursing home and in so much arthritic pain it breaks my heart.

We shouldn’t have to suffer pain in this day and age . It is difficult trying to stay positive, I truly hope this medication helps you and you get a better quality of life . Some warm sunshine on your bones would be lovely in the summer.

Have you tried Wiltshire farm foods ? It’s not the same as home cooking but no preparation.

I’m getting there slowly. It was a very frightening experience. It’s the unknown isn’t it .

Take good care.

Big hugs to you xx

JGBH profile image
JGBH in reply to Greensleeves

Dear Greensleeves, I totally understand how you feel about your dear mum. Heartbreaking when one feels hopeless to help in relieving pain. Glad you’re recovering from Covid. What a dreadful experience.

Thanks for the tip regarding prepared meals. I am quite fussy about my food... but sometimes we have to compromise. Have been looking at several other ready meals sources.

Thanks again for your kindness. I certainly hope the Tocilizumab will help me in regaining some kind of life, a better quality of life. If only! Fingers crossed.

Hugs to you. X

Greensleeves profile image
Greensleeves in reply to JGBH

It does hurt knowing my Mum is in so much pain.

It’s heartbreaking she was so fit and active .

I want her to live with me , if we can get a care package as she has to be turned.

They turned her last year and broke her hip her bones are so fragile, then sent her straight from hospital to a nursing home because of Covid.

My grandmother had Oak foods , she was always hungry , but it was so easy for the carers to prepare the meals for her .

Hopefully any compromise is temporary and you get some much needed pain relief soon .

My fingers are crossed for you.

Big hugs to you xx

JGBH profile image
JGBH in reply to Greensleeves

This is so hard for you and your mum. Do hope things can be sorted soon. I have serious osteoporosis problems, a broken pelvis... on top of RA. Get so fed up with it all. Take care.

Greensleeves profile image
Greensleeves in reply to JGBH

Oh that’s awful for you , very painful. I think we get continued pain from injured bones . Bless you, let’s hope this treatment helps you.

My Mum had an infusion for her bones .

It’s understandable it getting you down and making you feel fed up.

Take care and big hugs xx

I totally agree with you re diet....we all need to eat a good diet, especially when we've got inflammation going on.

PMRpro profile image
PMRproAmbassador in reply to Staplehurst

Mmmm - but the truth is - what IS the right diet for someone with multiple medical problems?

Kendrew profile image
Kendrew in reply to PMRpro

Chocolate! Wine! French Fries with mayo! 😄😄

PMRpro profile image
PMRproAmbassador in reply to Kendrew

Nah - FFs with mayo is yuk! Chocolate and wine is good for the endorphins though ...

Kendrew profile image
Kendrew in reply to PMRpro

OK....what about FF and aioli?

PMRpro profile image
PMRproAmbassador in reply to Kendrew

Better ...

OH was always offered mayo with his Pommes - too many Germans and Dutch tourists here ;)

Kendrew profile image
Kendrew in reply to PMRpro

👍👍

PMRpro profile image
PMRproAmbassador in reply to Kendrew

Mind you - prefer my aioli with fish soup :)

Kendrew profile image
Kendrew in reply to PMRpro

What???? .......how does that work?....is it stirred into the soup or something?

PMRpro profile image
PMRproAmbassador in reply to Kendrew

It's just dolloped on top when you serve the soup/stew. Or spread on the toast you serve with it.

Frewen1 profile image
Frewen1 in reply to PMRpro

You’ve inspired me, fish stew tonight

JGBH profile image
JGBH in reply to PMRpro

I so miss a decent boulliabaise! Or Provençal fish soup.

PMRpro profile image
PMRproAmbassador in reply to JGBH

Before my husband became ill we spent a few holidays in Malta - a couple of the restaurants close to the resort did a mean fish soup/stew! No point going now even if we could - he'd never manage the hill outside the resort!

JGBH profile image
JGBH in reply to PMRpro

Lovely memories for you but sad and frustrating not to be able to go back for the wonderful experience. Old age and/or debilitating health issues are no fun. I used to go to the cote d’azur often and enjoyed this delicious fish stew.... Quite lengthy in preparation and cooking but so delicious! Have a good day.

PMRpro profile image
PMRproAmbassador in reply to JGBH

Mmmm - he won't eat fish except as fish fingers (at his age!) or deep fried in batter! Usually a problem finding a restaurant that caters for us both! The best near the resort was to close just after our last trip - they timed it well I think. I'd make my own if it weren't such a performance, too much effort for one. I have a friend who swears by a tinned French product - but Italy isn't renowned for international sections in their supermarkets! At least the fish section in the big village supermarket is as good as you'd find anywhere outside a coastal fishmarket.

JGBH profile image
JGBH in reply to PMRpro

Agree too much work to prep and cook the dish. It also requires quite a variety of fishes and the freshest the better of course. I don’t rate the tinned French product though... I really like good food but it’s difficult cooking with health issues, everything becomes such an effort and the lack of energy plus pain don’t help. We have to do what we can...

PMRpro profile image
PMRproAmbassador in reply to JGBH

It is one particular one - and I certainly found a good one when we spent holidays in France - not recent though!!! It was great as the base for a fish stew done the way John in Malta did it in his restaurant.Our fish is delivered directly from Venice - it is so surprising being able to eat decent fresh fish in the middle of the mountains.

JGBH profile image
JGBH in reply to PMRpro

That’s lucky you found a decent tinned one. Yes, it can be used as a base to ‘build on’...Indeed you’re lucky to get a good variety of fresh fish from Venice delivered to your area. Are you in Ticino? I loved it there when on holidays a long time ago.... so beautiful by the lake.

PMRpro profile image
PMRproAmbassador in reply to JGBH

No South Tirol, the German-speaking region. We're just over an hour from Cortina d'Ampezzo and about 4 hours from Venice whichever way you go.

JGBH profile image
JGBH in reply to PMRpro

Another beautiful area! Relatively close to Venice too... Enjoy your day.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Kendrew

Agree, but all in moderation natch😳...my mum ( and don’t we all listen to our mothers🙄) - a little of what you fancy does you good!

Kendrew profile image
Kendrew in reply to DorsetLady

Haha!.... don't we just!!I do have a couple of pieces of dark choc every night but in truth, fries haven't touched my lips for quite some time and only had the odd glass of wine for Xmas, birthdays etc. Like you said....everything in moderation.....mostly!😃

PMRpro profile image
PMRproAmbassador in reply to Kendrew

I stopped wine for Lent - didn't miss it as much as I thought I might! But still have a prosecco on Sundays ...

Megams profile image
Megams in reply to PMRpro

~Lent is well & truly over now PMRpro - go for it!!! ~

PMRpro profile image
PMRproAmbassador in reply to Megams

Still need to lose weight ... :(

My friend would say when I quote everything in moderation. Well you'll only be moderately healthy then. We have to have some little things that give us pleasure for goodness sake. I like my dark chocolate too. Not the 70% cocoa solids though....that's like eating cardboard. Do enjoy Bourneville though. Never drunk alcohol and never smoked, so I will continue with my choccy forever !!

Kendrew profile image
Kendrew in reply to Staplehurst

Haha!....I only eat chocolate with 85% cocoa solid! Absolutely love it and now can't easily eat anything else....used to love Bournville but all I can taste is the sugar! Much too sweet for me now! I do like Galaxy too but the cookie crumble version and my son likes it as the top layer of the chocolate biscuit cake that I make for him.

Staplehurst profile image
Staplehurst in reply to Kendrew

My fav at the moment is Cadbury wholenut and Aero's. Gone off Galaxy. Also like Minstrels...I have a terrible sweet tooth, but wish I didn't.

Staplehurst profile image
Staplehurst in reply to PMRpro

As Kendrew has said haha ! Just eating really as healthy as poss I guess. Good mixture of oily fish, veg, and lots of protein.

Well said Kendrew, if only though !!

Kendrew profile image
Kendrew in reply to Staplehurst

I know...said tongue in cheek! Hope I didn't sound too flippant. Sometimes good to try and find a bit of humour though. Smiles and laughter are what keeps us going hopefully!

Staplehurst profile image
Staplehurst in reply to Kendrew

Nothing wrong with a slice of humour Kendrew

Kendrew profile image
Kendrew in reply to Staplehurst

.........and don't forget the chocolate!!😄😄

Always looking out for us. Thx. x

Enjoyed reading this but like yourself, didn't agree with everything she said...particularly regarding diet. We may not be able to cure our conditions through what we eat, but we can certainly improve their impact on our lives.I know from my own experience that eating a healthy and appropriate diet has definitely helped minimise some of the side effects of the steroids and other medication that I'm on. It's also helping to stave off any emergence of conditions like diabetes, high cholesterol and high blood pressure and generally helping to keep my body as healthy as possible.

We are what we eat..... if we eat 'rubbish', we'll probably feel rubbish!

I liked her advice not to try and 'push through' but to accept our new limitations and see each little milestone achieved as a small triumph, and not a failure because you can't do what you used to be able to.

Also liked her hilighting the fact that it's ok to have 'down days' and cry at times, because there will always be good days too. I've always said crying is not a sign of weakness.....it's 'the best words the heart can speak' ❤

Some nice points to remind us that there are always methods or strategies we can adopt to help us manage our conditions more positively and effectively.

PMRpro profile image
PMRproAmbassador in reply to Kendrew

Exactly - but her view does engender discussion. I think diet is far more important than is ever credited in the UK.

Kendrew profile image
Kendrew in reply to PMRpro

Yes....I agree 100%

An interesting read but my biggest challenge is admitting that I have a chronic condition! 6 years into this you’d think I’d have worked it out. The biggest hurdle is not yearning for who and what you once were/could do. My greatest achievement to date is taking responsibility as much as possible for my health and management thereof. Feeling more in control has helped and I do not hold the medics in such awe anymore. Some people think I’m nuts but once I realised my doctors didn’t know exactly what was going on I felt calmer and decided I had to work it out myself with help from them.

I read a lot, research as much as possible about diet, supplements etc that may help and follow many on this forum who share such invaluable advice. This forum is what has made the biggest difference to me and my understanding of whatever PMR actually is. My Rheumatologist and GP listen to me now and discuss with me as opposed to tell me what to do. I’m very lucky to have found two such understanding professionals but I still don’t have the answers and on many occasions feel a long way away from feeling I will ever be rid of this disease! But today the sun is shining and I have just returned from a glorious dog walk enjoying the majestic views over Edinburgh cityscape. Today life is good 😎☀️

PMRpro profile image
PMRproAmbassador in reply to Lochy

Been watching Paramedics on Scene - worth it for the views over the Forth alone :) I do love the 3 bridges.

Highlandtiger profile image
Highlandtiger in reply to PMRpro

They are wonderful. Have you seen them from above - on a plane coming in to land at EDI? It is the most fantastic sight!

PMRpro profile image
PMRproAmbassador in reply to Highlandtiger

No, haven't ever flown to Edinburgh so just videos of them. But they are so beautiful from any angle. My daughter lives in Rosyth so see them lots. Well, did before Covid ...

Highlandtiger profile image
Highlandtiger in reply to PMRpro

Oh. She has front row seats then! 🌉

PMRpro profile image
PMRproAmbassador in reply to Highlandtiger

Can't see them from her flat I don't think but anywhere else the pointy bits appear!

Kendrew profile image
Kendrew in reply to Lochy

I feel exactly the same and agree with everything you said.....I've yet to subtly convince my GP that I might know more than him about my condition though....and perhaps won't try with my rheumatologist!..... he's Prof Dasgupta!! (a leading authority on PMRGCA)😄

PMRpro profile image
PMRproAmbassador in reply to Kendrew

Doesn't matter who it is - you know more than they do about actually living with it. They may know the theory ...

Bcol profile image
Bcol in reply to Kendrew

Not had to do much convincing with my docs!!! never seen one since diagnosis and not spoken to one since beginning of November. Thank heaven's for this forum and the ability to research.

Kendrew profile image
Kendrew in reply to Bcol

Here here!

Heron82 profile image
Heron82 in reply to Lochy

You have encapsulated exactly how I feel about PMR. Some days are better than others and one learns to manage expectations and go with what your body is telling you. However, somedays this is easier said than done. I make lists of jobs for me to do in the garden and half the time don't make it past the first few items and some days not past the first. I should make smaller lists but as I complete jobs more get added.

Like others some days I feel near normal, but the next I can hardly walk due to stiff heavy legs and overwhelming fatigue. I push on though as for me the worse thing I can do is sit around getting bored, as my mind then wanders on to how things used to be (husband by my side, very stressful job that I loved - probably part of the route cause). Now 3 years on I am loving where I now live, though I miss my husband as he chose this barn for his retirement project.

Going back to diet, I too have used diet to reduce the diabetes risk from pred and have also lost half of the 2 stone I gained in weight. I am about to try the Mediterranean Diet, however tomatoes can be inflammatory for some people. I'll suck it and see.

On another note, been taking leflunomide now for 2.5 weeks. Side effects seem to be headaches, stiff, swollen, painful hands and feet and awful fatigue. As this drug accumulates in fat, does anyone know if the side effects can be cumulative?

Enjoy the sunshine everyone and love life. Hxx

PMRpro profile image
PMRproAmbassador in reply to Heron82

"as I complete jobs more get added."

Have you seen the suggestion that you make a list but only attempt the first 3 on any given day? Can't remember the exact details, but as you do the one at the top, you may add one at the bottom. But you have to be disciplined - no cheating on number of tasks done! Remember you can do more if the tasks involve different muscle groups and you can sit while doing something ;)

Heron82 profile image
Heron82 in reply to PMRpro

Good point. I'll give that a go. Thank you.

Forgot to mention the awful head/neck/top of torso sweats are more frequent too, also some hair loss. No gain no pain? Does anyone else get the awful heads sweats on pred? Quite different from menopausal flushes, but they are hot flashes of the head nonetheless. Had to stop tamoxifen as just couldn't cope with the two types of flushing. Quality of life was zip. Needs must.

PMRpro profile image
PMRproAmbassador in reply to Heron82

Quite a few people seem to have the drenching head sweats - I get head "glows" but not soaking wet thank goodness. I don't contribute to the "no pain no gain" thesis - it is certainly out of place on the lips of any gym trainer ...

Heron82 profile image
Heron82 in reply to PMRpro

Neither do I really, apologies for my being flippant. Just hoping it works, though. How much better one feels when the sun shines. Have a good day. Hx

Thanks very much; I saw it, but wasn’t sure how to share.

Thanks for posting helpful general article. I agree with you about diet. It gives a practical life- belt to hang on to when flailing about in the deep end of chronic illness. But I really do believe diet helps a great deal: it doesn't cure, of course not, but it gives your body a fighting chance against the inflammation. To quote the hospital dietician: of course you can go to a restaurant- but let it be the exception rather than the rule. Also goes for wine, choc, French fries, with or without mayo....

Nice piece. Thanks

Hi PMRpro I liked the article too, and the banter I had a much better day yesterday were as Wednesday I was very down, the article put it so well and you all helped me more than I can say. Spent yesterday in the garden potted up one or two bits 🐝 but mostly enjoyed being outside it was glorious.

Kendrew profile image
Kendrew in reply to Hiibilly

A bit late to the table responding to you, but like you suggested....this forum has such a lovely balance of support, advice, empathy, and humour. When friends here post messages that clearly show they're struggling, or feeling very low, there's always support, advice and empathy to help lift the spirits and 'hold their hands' for a little while. However, we also seem to be able to find and share moments of fun and humour in ways only we can probably appreciate and for me these definitely act as a kind of positive therapy. Friendship, kindness, 'sharing' and camaraderie are every bit as important to our health and well-being as all the knowledge, advice and information imparted through this wonderful forum, so sometimes when the 'conversations' seem to divert a little and go 'off piste' it's not always necessarily 'inappropriate content'..... it's merely..... 'friendship, kindness, 'sharing' and camaraderie!

Wonderful article. I just shared it with my daughter who has ME/CFS.

Doesn’t she say find acceptance and comfort? Exactly what’s offered here.

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