Does anyone else diagnosed with RA or another chronic illness struggle with their self-image?
I can't see how I can accept RA as a part of me, when it seems to sabotage everything else that makes me ME!
How have you accepted RA as part of you?
😥
Confidence, self image and chronic illness: Does anyone... - NRAS
Confidence, self image and chronic illness
Written by
TerrilouiseS
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41 Replies
•
Think of all the things you can still do rather than focussing on the difficulties. I continued with my sport that I'd been doing for thirty years or more at the time of diagnosis. Once under control my sport continued successfully. HTH?
It does help, thanks for sharing your experience. I think it's great when you can hold onto things pre-diagnosis. I started gardening rather than going out partying, quite a different experience 😊
Not sure what you mean as I am not defined by a disease but I have a condition that is managed and makes little difference to me. At times it flares but so many others have much worse illnesses. It hurts but I focus on the positive side in that medications are very good and really help.
I might be lucky but still ramble and bird watch, cook and enjoy life. I consider myself not so much as a set of symptoms but as a lady who lunches and still wears jeans and pearls. RA makes me tired sometimes and it hurts but it is manageable with common sense (for me that is) as I've learn't to walk steadily rather than race along the footpath.
So try to be positive and look out not inside and never dwell on what you can no longer do, but focus on the can do.
I think your attitude of not being defined by a disease is fantastic. It's so true we aren't defined by that.
It is good to know that there are those that have a condition is managed as it does give us that aren't well managed hope.
I also have learned that a slower pace of life is ok for me. A big change as 100mph was my default at living before 😁 I think accepting a slower pace of life has been part of accepting myself, as I had always prided myself on being a busy, energetic person. That image is one I find hard to not try and live up to. My mind is still 28 and my body feels about 88, I'm hoping this post and all the wonderful experiences shared will help the two to meet somewhere.
It probably will but its too easy to look in and miss the opportunities that still come by. I still birdwatch but cold is more of a problem than pain to be honest. I have to be careful with fatigue and my foot and hands hurt but I'm mobile and try not to rush about and do say no which is hard sometimes. My brain is about 35, my body at least 70 but my hope is that the RA continues to be stabilised and well managed. And as medications are improving all the time that one day we'll all be pain free and RA is just another one of those diseases that people remember but do not suffer from anymore.
Have I accepted RA as a part of me?......tough question....I feel like I am living someone elses life over the last year....I DO NOT think of RA as a part of my self-image...I think of my RA as a piece of dog poop that I stept on and can not seem to get it off my shoe...
Take care
Sue
acunatang• in reply to
I agree with you Sue, I feel the same, it's hard to focus on what I can do when I can't do much at all, I'm taking all the drugs they gave me but still constant pain every and all day!!
Acunatang
I feel about the same as you, it's incredibly soul destroying and I find it emotionally hard to remember what I can do, all this does is remind what I can't do 🙈
Have you had RA long?
T x
Hi T, I have been diagnosed this year but it has been triggered by my hypothyroidism being undertreated for years! I feel so angry at the way endocrinologists treat people only according to blood tests. I have been hypothyroid for about 15 years, was taking Armour but not enough, every time my blood was taken the doctor put me on levo again I tried it for about three months at a time each time I was sent for blood tests but it always made me worse, so I went back on Armour and pleaded with the doctor to prescribe Armour but she completely refused, at the time I didn't know enough about Armour because I was buying my own, when I started taking it I felt much better but in hindsight over the years I wasn't getting enough t3 and my body wasn't converting T4, in hindsight I should have researched thyroid years ago, I tried increasing the dose but it gave me palps so just went back to taking 1 grain, what I didn't know then was that I could have taken another dose throughout the day. Anyway after doing more research this year it became clear that me cells were completely depleted and this triggered the RA, my thyroid is still not stable and keeps triggering flare ups, the pain is horrendous I am taking Methotrexate and Hydroxychloroquin for two months but I feel worse at the moment. I have struggled through this year and continued to run my business but just working 1 to 2 days a week, I am close to bankruptcy and find it really hard to be positive through this.
Last year I was running my business, working part time in the outdoors, running, walking, cycling, paragliding, had my own allotment growing all my own veg, I was very healthy and now feel a different person, I can barely dress myself some days, I am a positive person normally and KNOW I will recover from this but some days I just cry all day. It is so hard to see the positives all the time! I am angry which is not helping!!
Well done you for working the 1-2 days when you're feeling so bad. It really is hard to see positives all the time. It feels like everyone around you is always answering things with positives which I don't know about you but I find it annoying especially if I'm feeling angry about RA. If I need to cry all day I do, why not it's good to get it out!
It is so hard to think of how able/capable you were before without feeling furious that you should be there again. I can imagine it must be especially hard for you as due to medical failings with your thyroid this has happened to you. I'm really sorry it happened that way, I really am.
I know you didn't ask me for suggestions so stop reading here disclaimer. Have you thought about acupuncture? It was the only thing that helped with getting my pain under control early diagnosis, I had 4 sessions at £40 each. I know that's a lot of money when you're worrying about finance. It may help, it may not. I wasn't optimistic with it whatsoever until I tried it. It also helped me to have some control or a feeling of being able to 'do something' about RA. It allowed me to cycle again which was fantastic. Oh so did having gel padded gloves and wide covers on my handles like these: chainreactioncycles.com/erg...
I met a guy at the gym the other day. I haven't been to gym in 18 months (couldn't walk). The highest attended member was a man with RA! I couldn't believe it. I've met him, he's been where we have and goes to the gym. Chuffed to find that out!
Take care
Terri x
Hi Terri, thanks for your comment and it's quite strange you should suggest acupuncture because that is what I am, i am a tcm acupuncturist and naturopath, I do treat myself and find it helps but with my thyroid so unstable it keeps triggereing everything!! I really feel like I will get through this and be back on my bike and climbing mountains again but at the moment I am making such slow progress that I find it hard to remain positive! I have been reading lots of stuff about the laws of attraction and what you attract into your life and then I get paranoid about it being my fault I'm not getting better because I'm not being positive enough!! I know lots of people with RA who live normal lives but at the moment for every step forward I take, I seem to take two back! When my body starts to properly recover instead of yo yo ing back and fore then I believe I can do so much to aid recovery but until I'm on the right hormone and right dose for my thyroid, it just keeps swinging one way then another!! My diet is highly nutritious and I am taking supplements to heal my gut and my thyroid but it will take time! I have an appointment for ultrasound on my thyroid next week so hopefully I will be clearer about what is happening there, i need to be referred to gastroenterology which I'm going to sort this Friday with my RA doctor, they are going to increase my dose on methotrexate and hxcl this Friday and possibly give me a steroid injection to reduce the swelling in my knee!!
I have never taken drugs in my life and because of this illness I have taken so many this year which I really don't want to take but I figure if I can get it all stable, I can then work on building my immune system and trying to come off the drugs while substituting with more natural methods!!
That is why I could not take much time off because people rely on me to help them get better! Having to work on those couple of days has given me some strength, when you know you have to be there for others it somehow spurs you on! I am glad you have had good results with acupuncture and it sounds like you are making good progress! Are you on any RA drugs? How long? When were you diagnosed? Hope you don't mind me asking all these questions!
Take Care
Angela x
TerrilouiseS• in reply to
Sue
This really brought a smile to my face as I also am living someone else's life. And the dog poop analogy really resonates. I do wonder if I have to accept the RA/RD or if I refuse thinking of it as said dog poop.
Sometimes when I can't do something I enjoy like going out dancing with my girlfriends in 6 inch heels I imagine I could meet RA and tell it what an a**e it really is. It really isn't welcome and I'd like to carry on partying, working, being pain free thank you very much!
I visualised a day before I began having the other day and closed my eyes to remember what my body feels like, I walked feeling the carpet rather than not knowing what the surface feels like because my mind is set on pain. It was truly wonderful, and I thanked the universe for allowing me to have that moment.
I see from your previous posts that medication were helping you, I hope that's still the case.
T x
• in reply toTerrilouiseS
Hello TerrilouiseS,
My RA/RD stared the summer of 2013, but I wasn't diagnosed until Nov 2014. Over the last 3 weeks or so, I just started to feel some positive effects of my meds. I hope the meds will make my RD go into remission, but I've read posts about people going in and out of remission. That does scare me.
What meds are you on? And if you don't mind me asking, how old are you? I'm still young, 49years old & married for almost 30 years. I do think I would feel emotionally different if I was younger. I think autoimmune diseases are horrific and it is a darn shame reading about people in their 20's and 30s getting RA.
They need to find a cure for this!!! Hope you are feeling better.
Gentle Hugs
Sue
TerrilouiseS• in reply to
It sounds like a real journey not too dissimilar to mine I started symptoms in summer 2013 when I was 26 and was diagnosed January 2015, now I'm 28.
Tried sulphasalazine first as I don't have children and my partner and I were trying. It didn't agree with me, which I took really badly as it is the only dmard that is safe for conceiving on. Prescribed mtx in May but stubbornly wanted another couple of months trying for a baby. Finally gave into not walking three weeks ago. Another strand of self image I have come to terms with, I am not meant to be a mum at this time in my life, shame as I've now met the right person to have children with. Lots of ppl ask us the typical questions of when are we having kids, it used to break my heart, I've accepted it now though. Mostly I dislike RA for taking the choice of when I have children away from me, as I try to live for today and remain positive it can happen one day. My boyfriend used to joke that being pregnant was the answer to my problems as RA can go into remission.
Really pleased to hear that you're starting to feel positive effects of meds, when you know how RA can effect that kind of news is fantastic!!
I feel very grateful for the very healthy, pain free 26 years I had before RA 💪🏼 here's hoping you have many with meds working, periods not in remission don't scare me anymore I think thank goodness I now have a diagnosis to go and ask for help armed with rather than the wilderness you and I experienced between symptoms and diagnosis.
T x
• in reply toTerrilouiseS
Oh T, I'm so sorry. I feel your pain and yearning about wanting to have children. It breaks my heart. I had a hard time having mine. You are only 4years older than my son, you shouldn't have to deal with this.
I'm on the sulfa that has a special coating on it so it never upsets my stomach. Though I do understand that some people are allergic to it.
Feel free to pm me if you want to talk.
sending you my love
Sue
carotopgal• in reply to
OMG, Sue! Thank you for the imagery and the laugh! I'd never thought of it that way, and sure enough you are exactly right!! 
It took me a few years to accept that this RA isn't going away, and to be honest since I have stopped fighting it life has got a bit easier, mentally, anyway.
I can't buy nice shoes, and I can't reach those nice clothes off the shelves in shops, but I have learnt to be patient, more confident and less bothered about what people want.
Since getting RA 13 years ago I have become a new me, I'm now 30 and doing things I would have never done if I hadn't got this disease.
How long is it since you have been diagnosed??
It will getter better. You will start to merge the old you with a new you, who has more knowledge, empathy and understanding to the struggles people have to go through on a daily basis.
Emma xx
Hi Emma,
I think your idea of merging old and new is exactly what I need to do. It's been 9 months since I was diagnosed and 26 months since I started to get first signs of RA. I spent that time before diagnosis fighting so much to 'fix' myself because I couldn't get Drs to fix me, that I now think I need to remind myself I don't need to fight anymore.
The good thing about not wearing high heels anymore is the opportunity to get new clothes that match flat shoes 💃🏼💃🏼 any tips on arthritis friendly shoes are always welcome!
T x
Were you diagnosed fairly recently? As it's a slow process coming to terms with this. It's a bit like the death of a close friend or relative in that you do have to grieve for the loss of the old you, and then have the time to come to terms and love the new you.
I used to love shoes, and had a wardrobe full of heels (I'm tall anyway, but liked being extra tall with heels ie 6ft plus). And really struggled with having to get rid of them as I'd no longer be "me", but my feet are so bad that there's no way I could walk in heels for more than a second now. However, I've come to terms with the fact that there's more to me than my shoes, and I can be me in flat shoes too. It just meant I had to completely change my wardrobe! So rather than lots of pairs of shoes I now have two pairs of very expensive shoes....and am thinking about getting a pair hand made.
I was diagnosed in January, you're right the process is slow. I'm realising that.
The wardrobe of unused heels is definitely something I can relate to. I started my shoe transition before diagnosis, I think about 8 months before as I couldn't wear my normal shoes. After a business meeting last year I went to a shoe shop and invested in my Arthritis Shoes. I walked out of the business meeting for a sale that was worth a considerable amount of money without shoes and it was then I realised I couldn't walk around living a hippy life style of no shoes with a business suit on. The woman in the shoe shop was probably about 50 and told me she couldn't let me buy the shoes I had chosen as they were too old fashioned! They were my only choice! They felt as close to heaven as shoes can get when your feet hurt, so padded.
I was gutted on the day, but now I look back fondly knowing that early on I knew how to adapt.
Would love to see a pic or a post about your hand made shoes should you invest....
Thanks for replying, I think shoes etc can feel like a part of who you are and you're right it doesn't define us.
T x
I relate to your post very much. I went through quite a self-image struggle as RA robbed me of more and more aspects of myself. It's difficult to go from being very active and involved in family, work, and community to being largely housebound. As the years went by and I had to let go of career, volunteer work, housework, hobbies, etc., one by one, it was hard to think positively about myself. But I came to realize that I am still me. All the things I did weren't me; rather, they were outward expressions of me. I have a body that doesn't work the way I would like it to and it hurts a lot and is easily fatigued. But I still have my determination, my love of nature, and my sense of humor and I find ways to entertain myself in new ways. One of the more difficult things for me to let go of was bird-watching. I can't hold binoculars for very long or go hiking any more but I can follow online birding communities and chat with other birders. I can paint and do puzzles. I can putter around my house and do a few housework-type things. With some planning ahead I can visit with family and friends every so often. No, it isn't the way I would like to be living my life, but this is the hand I've been dealt and I've (mostly) made my peace with it. It took me a long time. I think having a very loving and supportive family helped me quite a bit - to be reassured constantly that they would rather have me around as couch-potato than not at all. Haha! So I guess to answer your question, I've accepted that RA has changed how I live my life but it hasn't changed the fact that I am still me. As Purplecats said above, it does get better as we learn to live with the changes. All the best to you.
You have described my exact battle. Fairly quickly and surely more and more aspects of 'myself' are changing, and in most cases it's ok for me to accept. Some things I accept, some things I just cannot. Visiting family and friends is the hardest. Ive realised at the moment I have to choose between working or seeing family/friends. For someone who used to travel every weekend this has been a very hard choice to make. I have lost a particularly close friend because of not being available due to pain etc and I hope that won't be lost because of RA.
I like that you differentiate the things you do with your sense of who you are. You have given me an idea to list what makes me me, I have been thinking it's my actions that make me, not my personal qualities.
Thank you Tam92, really appreciate your words and time
T x
I do feel for you. I think my acceptance (if that is what it is) comes and goes. As the years have gone by (had RA since I was 28, now 44) things have changed physically for me. I was far more accepting in the early years as I didn't feel so affected - but I am now limited physically in what I can do due to joint damage and pain.
I find it hard to be honest and I often hate that I am unable to do x, y z. I am more limited than my in laws in their 70s and that depresses me. I hate that my eyes are affected now and that currently really affects my self confidence as it is a relatively new issue. I am still me, but I get fed up of the new me!
Yes it is hard. Some days are better than others however. It is a long process of acceptance and for me anyway I get hit again every time something else 'goes wrong'.
You will find you are far more resilient than you think but it is also OK to feel fed up with it all. Best wishes.
I agree Pands that the going wrong times are bad times and others are good times.
My mum has always said to me that you are given the hand in life that you are strong enough to handle. Most of the time I feel strong enough, sometimes I don't and thanks for saying it is ok to feel fed up 😊
Your honesty is very refreshing!
T x
You've hit the nail on the head. I personally think that confidence is bound to be knocked to some extent by a diagnosis of almost any chronic condition.
I thought I had this licked .... then, recently, I started to get major hairloss due, most likely, to severe scalp psoriasis. I have naturally thick hair so the extent of it is not immediately obvious though I quickly got 2 large bald patches right on the top of my head like Friar Tuck, or 2 Friar Tucks! All in all I've lost about between a third and a half of my hair. At the same time I had extensive and extremely uncomfortable psoriasis on most parts of my body. Very quickly I started to wonder where 'I' had gone. And how I'd cope without her, or me, or whatever .... very confusing!
Strangely, after a fair bit of wailing, sulking, and various forms of misery I started to feel okay. Not absolutely fabulous, but okay. We are more than our shoes or even our hair ..... But what has really helped is that the hair is starting to grow back. Similarly, seeing some improvement in the RA or PsA etc. (and lets face it, very often we have to work quite hard to get some improvement, we can't just leave it to the drugs) is incredibly good for morale.
I'm still on tenterhooks (whatever they are!), the problem could easily flare up again, my PsA definitely flickers even if it stops short of a full-on flare ... uncertainty reigns. But there are things that knock us down and things that build us back up. And the main thing that builds us up is our own determination to have as good a life as we possibly can. Every little success and every big success contributes to self-esteem and can make a 'new you' that in some ways is even more worthy of esteem than the old one was!
TerrilouiseS• in reply to
I completely identify with the hair loss and loss of self. Every time I saw the amount of hair coming out of my head I felt like me was being lost. Of all the changes in life from RA this has been the one that hit me the hardest. I too have thick hair so the hair loss isn't obvious. Sorry about the friar tucks! Nightmare when people say 'you can't notice, you've got loads of hair' and I'm thinking omg I didn't even know what my scalp looked like and now here it is (my hair loss is right at the front) I looked a bit like a thinning man head and occasionally on low days wonder how long it might be before I'm rocking a comb over. Try and psych yourself up to take mtx when one side effect is hair loss and thoughts of comb overs consume you, erm nope. I have started taking mtx despite that, as the hard work does need to be shared with some drugs.....
I never thought hair would be something I would worry about it seemed so shallow but for me it represents and constant reminder that change is happening to me and I cannot control it.
Hair goes hand in hand with femininity, beauty and has really made me think: what if my boyfriend leaves me for a person who he can't see her scalp and he doesn't have to unblock the shower so often. I'm glad to report he actually wouldn't dream of that and has reassured me that even though I feel I'm losing myself to arthritis, he thinks of me as just as fabulous (he's a keeper).
Really good news that the hair is growing back, how encouraging, you're winning!
Here's to all successes big and small, T x
• in reply toTerrilouiseS
I appreciate that Mtx can cause some hairloss. However mine was more likely caused by stopping Mtx! I'm on Humira & stopped Mtx back in January as my liver enzymes were persistently elevated after nearly 3 problem-free years on the drug. In fact my hair was as thick as ever in that time.
Then I got this almighty psoriasis flare and the bald patches followed on. I have maybe 8 of them in all, but most now have downy re-growth which me and my husband delicately refer to as 'Bum Fluff Islands.' My rheumy was pretty sure that the flare was triggered by stopping Mtx and it looks like he was right as now that I'm back on it, both the skin disease and the resultant hair loss have improved. I do have psoriatic arthritis but have never had psoriasis like this. And I certainly didn't know that withdrawal of Mtx could cause a psoriasis flare.
So what has actually caused your hair to thin? Was it RA? Could be as it puts a strain on the thyroid gland I'm told. Sooo, with a bit of luck Mtx could actually restore your crown of glory! I hope so!
Your boyfriend sounds lovely! I too have a wonderful partner and in general the good 'uns don't let a few little changes put them off. I think my husband reckons that women who don't block up the shower are overrated!
TerrilouiseS• in reply to
Even though you stopped mtx which sucks it's really encouraging to know it stopped hair loss for you! Yeah it is RA that is causing hair loss. As soon as joint pain increases hair loss ensues.
Yeah he's alright, I offered him a pass out of the relationship when I had my worst flare in December,he laughed at me like leaving wasn't even an option, bless.
Your husband is hilarious! My friend has some bum fluff islands as she gets bald patches from stress and also assures me that the tufts are excellent signs of a return, I hope mtx sorts you out again lovely.
T x
Hello TerrilouiseS, I see from your profile that you have been battling for two years now. This is a difficult one. I don't think of RA as being part of me, it's more like an uninvited relative who's come to stay and just won't go away again. It took me several months to accept that I'm faced with a fact and I will have to deal with it. I was very lucky to have excellent care once I was diagnosed (2009) and a supporting family. Over the years I have come to learn that I have to be in control and make the best of what I've got. Apart from RA I had all sorts of other things thrown at me, but I just don't battle with them. There are always ups and downs, things that are out of your control, but there is always something that can be done about them. There is help out there (and of course all the lovely people of NRAS and this forum). In November I will attend a Expert Patients Programme (EPP), a living well course subtitled "Patients are more than their illness". I am sure I will benefit greatly from that and maybe even become a volunteer tutor after more training. I hope you can get a little help and strength from all the replies you got and wish you all the very best. Bless you.
Hi stbernhard, I have drawn enormous strength from replies. It was something I was battling yesterday and I love the fact that this forum gives a space to get those feelings out there in moments that could be quite isolating.
The course sounds fantastic! A paper I read yesterday after some thoughts around how ppl with chronic illness view themselves, was along similar lines and I found it extremely helpful. Weirdly, I actually don't identify as a patient. I remember my first sulphasalazine blood test back in February being in my GP waiting room with all the 'sick people' and thinking that I couldn't be a 'sick person' for the rest of my life. I hate being called a patient lol and I finally started back at the gym two weeks ago 💪🏼
Where is the course based? I really hope you get lots out of it and perhaps write a post on it so we can learn from your experience....
Best wishes
T x
I'm in West Sussex. I'll try and find out if the course is being rolled out all over the NHS and post my experience. All the best!
This d condition has taken so much from me in the fewbyears I have had it I can no longer do the thingdloved each week it takes something else I have kindred use of my hands now I am strong willed and puss on regardless
I have this disease, and nothing is going to change that. So it is up to me as to how I choose to live with it. I find the teachings of Mindfulness and Meditation very helpful. When first diagnosed, the idea of living with this disease terrifying, and could only think of how horrible my life was going to be. Mindfulness teaches you to not waste time and energy worrying about the future, as the future hasn't happened yet. And that everything in life changes, nothing remains the same. So when you are having a bad day, it does not mean every day from then on will be bad. You just have to get through the bad days, and then better days will come. And then when you have good days, enjoy them, but don't count on them, as at some point you will have a bad one again. As long as you know it will come, you won't get to let down and overwhelmed when it does.
The more you read and educate yourself on these things, the better you can understand the workings of the human body. Getting upset and stressed over what is going on in your body actually physically makes your symptoms worse. Breathing, relaxing, letting go, won't make the disease disappear, but it will make it much more tolerable and less all consuming.
I am a positive person and I know when I am defeated. If parts of my body won't play the game I can't turn this into something good
TerrilouiseS• in reply to
I have had times where I thought my body has let me down, it was one part of life that I could depend on and it let me down. I really identify with what you've said here. I had a small victory and finally thought I have the energy to join the gym again. The guy who joined me up there was fantastic and he made me a really good foot and hand friendly programme. My goals are so low there that I feel like I haven't set myself up to fail, or my body to fail me.
The gym was something I did a lot before, I've adapted it by doing exercises that keep weight off my feet. It was extremely encouraging! It really has given me the smallest amount of confidence in my body again
T x
To me its not about turning it into something good but growing old as disgracefully as I can in my bright blue Dr Martyn boots, and accepting that my life has changed but it is not going to stop me enjoying it.
I hope one day this disease will be preventable but in all honesty I was relieved when diagnosed as my mum had Oestoporosis and died having shrunk by many inches on morphine patches and with many spine fractures. I really feared that one.
Sorry to hear about your mum, she sounds like she was a trooper.
And as for your Dr Martyn's, I've heard they're good arthritis shoes, are they worth a try? 😀😊☺️
T x
Definitely actually because crepe sole they work really well and wide opening as well. Look cool with winter tights and skirts too. I'm going to buy another pair in local town there is a specialist shoe shop does all sorts of weird and wonderful shoes, expensive but nice. I bought mine for my sons wedding last year there and with Nuroma's they say(including surgeon ) a small heel helps. Those very expensive sandals are rather nice and a bit different as well. And I now choose shoes in bright colours as well, if like me you need 'sensible' shoes might as well be in a great colour. But do look up Hotter really nice suede heels are lovely in wide fitting are nice and pixie boots very warm although mine are last years red.
My mum did suffer but was fun, and thank you she did have a sense of humour even when in great pain. My pain is limiting hers was all invasive and thats why RA is too me not so bad. I'm relieved that all scans i've had say no signs of Oestoporosis and that is great, I can cope with the RA but the other probably not.
Loads of shoe options such as Hotter, Fit Flop, Sketcher plus my podiatrist made me insoles our of vinyl stuff which I recycle now and my only heels are Fly which are wedged. I'm into nuturing my eccentricity but I'm an artist so it's almost a prerequisite!
I don't know what to say about acceptance because I have a shape shifting connective tissue disease that became RA for a while but is now mysterious to the point that I would almost welcome RA back as an old and familiar friend.
Speaking of which an old friend phoned me the other day to see how I was getting on, with us having recently relocated. She kept mentioning my RA and health in general and so I finally said I didn't think I had it anymore and she said "hmmm so you are back in denial I suppose?!" So no I haven't accepted RA although I was diagnosed four years ago this month. My old rheumy said he couldn't find another name for it yet and I've yet to receive a letter from my new rheumy with possible rediagnosis. Either way no doctor is prepared to let me try anymore RA drugs yet because of allergic reactions to four so far. How does one come to terms with a shape shifter such as this?!
This disease hasn't really knocked my confidence in itself but other symptoms such as mouth tightness, fatigue and dizziness have slowed me down. I've had pain all my life of one sort or another, never wore heels because me feet were always too sore, hair dropped out completely as a nine year old and carried on growing and falling out in stages. I was covered in eczema. So now my hubby says I'm actually more physically attractive and confident than I used to be when he first met me 30 years ago. I have a great head of hair now and know if it fell out again I would be heart broken. I know I'm more than a head of hair but having lost it several times over a lifetime I never take it for granted. I guess all we can do is try and live in the moment and be sure to sieze the day whenever we can.
Hi Terrilouise,
Only recently being diagnosed, I am fresh to feeling good one day and bad the next. The shoe thing, well got rid of loads of mine last year when my physio got some inserts made and now I only have two pairs of shoes, trainers and Fly wedges, which I love. Will also have to invest in another pair of (not so exciting) comfortable shoes. I mean, walking is the only thing that I do, so I have to be able to walk comfortably. That said, a slower pace of life is something that I have embraced, but in my head I am still whizzing about at 100mph. It takes time to adjust a bit.
My Rheumy nurse asked if I had problems accepting the diagnosis. I suppose at the time (5 months ago) I was asking loads of questions etc. Now - I am more pragmatic and if I have to change my baking habits, cooking habits or whatever, then I will do it to make my life much smoother.
Life is always about change, something we can't avoid, so even through the tears or moaning days, I do try to be 'in the moment' as projecting too far ahead will only bring me down.
You are still 'YOU' on the inside and the essence of YOU will never change. The height of our heels might, but I for one am going to buy my Doc Martins and adjust my wardrobe accordingly!
Hurray to new shoes AND a new wardrobe 👚👗👢💄👓👒👙
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