I've just gone through my morning ritual of pill taking and have really stopped and looked and the number I am taking to get me through the day. It seems a ridiculous amount and yet I still feel so unwell, I wonder what the benefits are in taking them all.
I know I keep harping on about the link between the psychological and the physical but when I look back on my life with RA it seems that I am a lot more aware of it's impact on me now than I was then. Am I actually struggling more now, or was the drive to keep children and house together as a single parent the distraction that kept me going through the hard times ten years ago? Perhaps I have too much time to think about it these days but it is puzzling to relate my pretty stable bloods to the amount of pain and debilitation I feel present. So what is going on?
I think that a lot of the pain I experience now is the result of permanent damage to my joints both through RA and through general wear and tear. Apparently they are able to tell the difference between the joint damage (RA joint damage has a smoother surface) but I'm not sure how relevant that is from a treatment point of view - both hurt.
Arthritis in the spine, knees and ankles are the real killers for me at the moment and bring unspeakable pain and loss of mobility. Stiff fingers, wrists and shoulders pale into insignificance in the shadow of this. Of course, loss of mobility means weight gain and more pressure on the joints but I wonder whether I have stopped taking responsibility for making things better for myself, if I have stopped believing I can make a difference or even whether the pills I take leave me feeling too tired and fuzzy-brained to care. I suspect a measure of all three.
If there is one single thing I wish I had done for myself and to which I attribute much of my pain now it would be to have controlled my weight. Having got this far in my blog I have suddenly remembered that steroids helped me to maintain my lifestyle earlier on. I wasn't on massive doses (20mg a week maintenance) but it was for a long, long time - it kept me going and was invaluable in the years before I finally got the Anti TNF.
As we probably all know, steroids increase our appetite and food has always been a great source of comfort to me. Combine the two and the result is too much pressure on already inflamed weight bearing joints. I could go all Pam Ayres on you again here and echo her ditty about how she wished she had looked after her teeth which, in my case, would be joints but out of sympathy for Feather in particular and for many others I'll hold back from breaking into verse again as I'm pretty bad when I get going.
A combination of feeling miserable and leading a too sedentary a lifestyle undoubtedly contributes to the perception of pain - popping pills is unlikely to make much of a difference here and maybe this is where alternative or complimentary therapies come into their own. The reality of pain caused by bone grinding on bone is unquestionable though and to my mind should have everything done to alleviate it. It's a difficult one to know what to do for yourself. For RA inflammation the advice is rest but for osteo-arthritis the advice is movement - No wonder pills become the answer. The one single thing that would benefit both conditions though is not to put more pressure on them by gaining weight, it is sooooo difficult to get it off again once your mobility is compromised.
There is little point to this blog really other than sharing a few thoughts as I riffle through my bag of pills and to try to regain the incentive to get back on the diet after an appalling relapse during the 2 weeks my cousin was here.
It is really ironic that in order to survive we take more medication. One tablet to counterbalance the others. Steriods have their place in our illness and have saved many a life. It is a difficult balance as you say. It is easy to look back and wonder how all this extra weight we put on. As you say it is more difficult to lose when one becomes immobile. Your aquarobics is a brilliant form of exercise. Also a good way to socialise. It is never to late to Lose that weight. But you can certainly look back on all the joy and be proud of how you raised your children single handed. That in itself without the contributing factor that you had RA. I am proud of you. Keep shaking that body to the rhythm. Keep us updated with your progress. Luv and hugs Carole
Carole,
Thank you. A perfect response and just what I need. I shall create my own personal Tsunami in the pool for one more time before going in for my ankle surgery next week. I was going down the "no point in bothering" route until your reply.
Judy, don't get too down before your op. I wonder what we would be like if we didn't take them thats what frightens me. I have a little cap type thing that comes with medicine and i fill it up twice,once for the prescribed drugs and then again for the healthy stuff thats supposed to help keep joints going. Weight oh how i wish i could lose it,i really do,but we're in a catch 22 aren't we. we need the drugs to help the pain and it also makes us immobile and with that comes the weight.
Keep your chin up Judy soon be all over and you will beo blogging ua with tales of your op.
I relate so much with what you are saying Judy. As you know two of my boys are off to uni in the next couple of weeks and I've been feeling a bit sad of late. But I did it. I brought up three boisterous boys and they've become such amazing adults that my heart swells everytime I think of it. They are compassionate and caring and I'm certain that it has alot to do with what they've experienced with me over the years.
But I feel the same as you. Ten/Fifteen years ago I just got on with it - bar the odd blip when I ended up in hospital - I look back now and wonder how on earth I did it. Now, I'm constantly aware of my limitations and worrying that I'm overdoing it.
I've got two interviews next week for two jobs - one part-time and one full-time. I veer from being really excited to being absolutely terrified because I'm not sure I'm going to manage. But 15 years ago, I worked and looked after the kids and I just did it.
Aargh it so awful sometimes isnt it , pills, kids, juggling life ,shopping, cleaning and hospital appointments !!!
But today I have sunshine here and the kids are at school and working so today i'm gonna "always look on the bright side of life doo doo ,doo doo doo doo doo doo!!!!!!" Altogether now....well at least till after lunch lol
Haha - well at least it's not Barry Manilow. You've got me singing again although I always find a bit of Muse full blast is a good motivator (and they are local boys).
lol U leave my Barry alone !! But i would have loved to be at that Muse homecoming concert!! but Foos at Leds fest this year....legends, that is legends not leg ends!! Axx
Hi there Judy - no answers from me of course but here are some thoughts for what they are worth. I'm still working and still looking after young ones just about although youngest is 15 and a half so I'm not so far off having 3 young adults. But I do wonder (from a position of relative ease) if the resting thing is a myth in terms of RA? All joints need strong muscles around them to support them and the more arthritis the joint the more important it is that the muscle can carry it. I've thought this from the outset of RA symptoms and have kept moving whatever the pain levels are like. If it's possible to deter this thing from taking hold of us then I'll do whatever it takes.
My hubby is a care worker in an old folks home and he sometimes tells me that those who have given up are the ones who need to be hoisted etc and those who get their weight to moderate levels and who stay off pills have the better quality of life. I take this in but think for most people being in a nursing care home must be pretty hellish whatever your physical state so it isn't anything that affects my behaviour. I hate starving myself and I hate the thought of piling the weight back on in equal measure so I just keep to my very worthy diet and eat a really good, large, healthy meal around tea time (5.30/6pm) each day and exercise in any way I can. And when I'm at my lowest moments I think of Stephen Hawkins and his contribution to the world compared to some who reach 101 but look absolutely miserable on it! It's a question of keeping the brain engaged and the body as mobile as you can reasonably manage and you obviously do that - the rest is beyond your control so leave guilt up a mountain somewhere and just keep going. Good luck with the last tsunami and the op! Tilda xxx
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Hi Tilda,
I think that you are absolutely spot on with your approach to this disease. In retrospect I was just fire-fighting in the early years in an attempt to pursue a career with which I could provide for my children and at the same time, give them a decent childhood.
I wasn't thinking about long-term consequences and I think I'm probably paying for it now. I popped the steroids rather than looking at life changes and I saw weight gain as an inevitability.
I've just come back from a pre-op appointment. My consultant (who I think is about 12 years old but lovely with it) says he is going to fuse 3 bones with nuts and bolts and shorten my Achilles heel with a few snips here and there. I may need a bone graft which he will probably take from my hip bone(we both giggled at that prospect - good luck with finding it).
I still don't have any news about where I go when they discharge me after 2 nights because, given that I was told that my ankle must remain elevated for 2 weeks and I am not to move it except for essential trips to the toilet, I clearly can't go home.
One thing he did emphasise, however, was the importance of losing weight. He reckons my ankle would have lasted at least another 5 years had I not been overweight and that, following the op, the other joints in my foot will have to work harder.
I'm trying not to beat myself up about it and will leave my guilt up that mountain but I am on a mission to advise anybody and everybody on this site not to let themselves go as I did. xx
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Thanks Judy I think you're really brave and I love the way you just face the weight issue head on. I was obese when my inflammatory markers came back high and my RF positive and am now just quite overweight. It's got to the stage where it's really hard to lose weight unless I virtualy starve myself and
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Woops clumsy fingers clicked on reply before I was done! What I'm trying to say is that I'm very lucky in that my RA was caught early and also I have had a lifetime of steroid creams and bursts of oral steroids but now I can't take them without going bipolar which is actually quite helpful because I've had to look for other ways to address this disease. I don't know if my RA has been quiet for several months now because I exercise and have had good fortune with my meds or whether I just have it mildly to begin with (not what the doctors thought though) but I know that I will never let myself get fat again and will keep trying to lose more until I get to the right BMI for my height and frame - whatever it takes. RA has taught me quite a lot I have to say - I think my late mum would have thanked it heartily for bringing me to my senses!
Surely they will have to help you keep that leg up somehow whether it's by keeping you in hospital or organising for a nurse to come and look after you in your home? Could you check this out with your GP perhaps? TTx
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Been there, done that, got the forms filled in. It's a little bit complicated unfortunately. My daughter will move back into my house to look after her dog and the cats but she is not very well and would find it emotionally very difficult to have any sense of responsibility for me (even if I have a nurse and meals provided)!
In a normal world I would have the dog in temporary kennels and help coming to the house for me but unfortunately in order to protect my daughter (and myself) it is easier for me to go into the kennels. Exactly which kennels is still to be arranged though. It may be an old people's home which will be very hard so expect numerous blogs. xx
You're right about exercise. I've been losing weight recently and managed two hours of tai chi followed by quite a long walk home after quite a demanding day. I think doing things gradually is the answer. So we're back on porridge for breakfast - no more buttery toast - x c
Fortunately I love bit of porridge, with a few sunflower and pumpkin seeds thrown in, it's good for the cholesterol as well. Toast is so much less effort though isn't is. (No microwave house here)
I just stick oats in with twice as much milk/water, boil it up, then turn it off with a lid on and its pretty much ready. Am really telling myself this is the thing to do now until next summer!
I'm with you on this Cathie. I'm not sure how long it will be before I get back into my own kitchen after Wed though. Maybe 6 weeks -by that time it will be nearly winter (scary thought). We've spent the year waiting for summer it seems.
I think this is just an advertising blogger - Can Health Unlocked supervisor check it out please.
I've just reported it too Judy.
I wouldn't be too surprised to find myself in kennels. My mutt Roger is 17 so hardly a week goes by without a visit to the vet. Obviously we don't have pet insurance so the cost is unbelievable, really. In order to distract me, I think, the vet sometimes gives me health care advice & she has actually discussed my condition & medication with me more than my GP (whoever he is). Thanks to her I have a nice, wet nose.
Are you still going swimming, Judy? I know it's not the quickest way to lose weight but regular exercise does help to regulate appetite plus it's so easy on the joints. And I find it's good for the vanity (for want of a better word); I usually feel more at ease in my own skin after a swim.
Steroids. Seems to me you did what you had to do. Do you remember those YouTube videos featuring an interesting American Rheumatologist that someone posted? He opined that the reason RA was on the decline in the USA was because fewer people smoke. Well I used to smoke myself daft so I did beat myself up about that for a few minutes. I mean, I know this might sound like a platitude but what you did in bringing up your kids, popping the pills to keep going, is heroic by my standards.
But don't give up on the weight loss - would 1pound a week be doable? I know losing weight is something you really want for yourself but you love food too, so maybe the two yous could come to a compromise?
I don't really have much pain (tho' that could change as today is my first day without steroids) so I feel that I'm in no position to say anything to anyone who has pain to contend except that I do hope the operation brings you relief.
Thank you so much for thinking of me before bursting into doggerel. Perversely, I was tempted to write this in rhyme but resisted.
Christina xx
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Just read back .... an old peoples' home???? Bizarre but could be interesting. You're a natural writer, aren't you, you could do something with an experience like that. (Just a thought.)
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Too right!!
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Hi Christina,
I have to confess to letting the swimming slip while my cousin was staying. I found it too difficult to prioritise for various reasons but hope to get a couple of visits in before the op.
I've been asked to be a case study ankle for a course for registrars which is to be held at the beginning of the week. My consultant was thrilled that I had agreed to this and suggested I bash them with my stick if they hurt my foot. A little alarming and over-the-top I thought but I'm willing to give it a go and you never know, I may get extra special treatment with being a case study and all that.
Re the smoking: I am also an ex but have often considered taking it up again for the benefit of my health. My doctor seems to think there might be something in that. Shame that they make me feel sick now. Rolling them was always so satisfying. I learned to roll them with one hand whilst charging down the road to Uni, always late because I had to get the kids off to school first and my daughter always insisted in moving all the slugs and dung beetles off the lane on the way to the school bus pick-up point.
Thanks for your support.
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Yes, roll-ups, me too! Apparently some authorities on the subject think that smoking can have a beneficial effect on Psoriatic Arthritis but I think you have to take it up after getting PsA or something as opposed to just smoking for ever & ever.
Agree with you about case study, may well ensure you get the gold star service. Sounds like it might be fun, as well.
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Haha. I was thinking of it for dietary and mental health aid. Just kidding folks!!!
You know as a previous stop smoking adviser and lung health nurse i can't leave that one !! ha ha x(Lecture over lol ) xxxx and yeah I started the diet!!Axx
I've just got back after a couple of days away, and have so enjoyed this banter. Isn't it great that the one thing we have in common unites us in so many other of life's hurdles. Hope all goes well with the op, the swimming, the drugs!!! the kennels, the pills before bed routine and any future diet...I'd like to join in if only I knew how, will write a blog on what I've been up to lately soon. All the best Carol
Yes, it is interesting isn't it how a single commonality can form such a bond in cyber space, no wonder social psychologists study the inter-action of these groups. It shows how important it is for us to search for these links in society.
Look forward to hearing what you've been up to. xx
As a former smoker (not heavy) and member of the obese club who is now a born again health freak (just kidding) I can't sit in judgement about any aspect of health really. But re the old folks home - my husband tells me they occasionally get younger people with MS or other mobility issues post op in the home where he works so this doesn't sound at all outlandish to me. And as Christina says the literary fodder would be great too - perhaps we should create a sub group on this site for those with literary ambitions - wRAiters or writeRAs? X
What a good idea. WriteRAs is my personal preference I think Tilda (although it sounds like it could be used as an insult - "you are a right R.Ass!") wRAiters sounds as though we should be taking food orders with a bit of a lisp.
Hi, I didn't realise how much weight I had put on until had to shop for a new dress for my ma-in-law's 100th birthday party!!!! Luckily I had 4 months to do something about it.
I joined slimming world (this is not an advert) with my daughter and I love it!!!
The best bit is that I actually have control over something since RA took hold of me 3 years ago. SO have lost 22.5 pounds - hurrah and feel so much better, not great but better.
Perhaps being a control freak has something to do with it????
Just to say I am 64 and been on many diets in the past but my determination this time has surprised me. Still a stone or so to go though. Oh well!!!!!
That gives me hope Jan. It is possible then. I'm hoping that I'll lose weight when my ankle gets done - if nothing else, I won't be able to walk to the kitchen cupboard!!
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