Hey folks I'm feeling great again today! And I wanted to share some thoughts with you about the reasons why.
I had a physio session today - my last for a month or so. My physio is lovely. She is very sympathetic about the RA in a practical sort of way. I don't moan to her as I try and present an up beat image but she seems to know when I'm worrying or down and she helps by giving me info about what she's doing or finding and by making practical suggestions re exercise and props. I've been seeing her twice a week for the past month about the synovitis (sp?) in my left ankle. She usually just gets gel and gives me an ultrasound massage in the affected joint but today and also a few weeks ago she gave me a deep muscle massage in my calves. It was agony - but good agony if that makes sense and doesn't make me sound like a masochist!?
The other thing that keeps me boyant is singing and I recommend it to anyone who has a half decent voice and loves music. If you can read music it's even better i feel but quite a few women in the town where I live go to a local singing group where it's all done by ear. I'm also in a very big choir - over 100 strong- which sings a large scale piece every year in the St Magnus Festival here. We will be singing A Child of Our Time by Michael Tippett - an incredibly stirring piece of music. Quite a few members of this chorus don't read music and rehearsals start in February and the build up is really exciting. This year we are being accompanied by the RSNO (Royal Scottish National Orchestra) and conducted by Sian Edwards - who is absolutely lovely. And it's a really hard piece of music to sing in - even for me who sings in a small chamber choir and reads music quite a lot. And no I haven't got an amazing voice at all - just alright really - quite accurate and quite good at sight reading now but nothing special. But I love it and it keeps me sane in a different way to my normal work as an artist.
My small chamber choir are also singing Andrews Sisters Boogie Woogie Bugle Boy from Company B amongst other things at the launch event for the festival in June and that really is a hoot!
Lastly walking as much as I can is the other ingredient to staying healthy and sane for me and I would continue to do it even if my legs or feet got worse I hope. Today with, lovely sunshine and plenty of layers because it's still very cold, my OH and I walked the dog for about 5 miles round the shore of the loch close to the ancient stone age circle of Brodgar. There are no hills to tackle so it's quite a gentle walk for me. A year ago this walk would have seemed quite long and time consuming and my knees would moan for days after doing it but now it's like a short stroll - which speaks volumes about my fitness and weightloss. My ankle always gets nasty at a certain point which is strange because I do hobble when this happens at exactly the same point and then it seems to righten itself again - a little odd but perhaps the ground tilts a bit just at that point!?
Finally I wanted to post this link on for you all to look at because Sarah Kate from NRAS came in on my old blog about the chap who got heavy about my drug regime at dinner. So I looked to see where I'd read that my GP had been quoted saying that our surgery are prescribing oily fish to those with heart conditions. And here it is; telegraph.co.uk/health/diet...
I do believe that diet is fundamental to our general health and wellbeing but I don't actually believe it changes RA directly - or certainly not for me. But taking the weight off load bearing joints can only be a great benefit to us so worth making adjustments if anyone here doesn't have such a great diet and wants to lose weight. For me all these things plus Methotrexate and Hydroxy are helping me to feel so much better this week!
So wonderful that you are well and in a good place right now. All the best. X Jo
Thanks Jo - yes it makes a change after a year of fighting off the blues - but thinking about it although I blamed the drugs I believe it was being in constant low level pain so the rheumy was right and it goes to show that side effects and all are worth getting through or putting up with to a degree if the pain lessens this much. I'm not thinking it will last forever mind - but just enjoying each sunny day as it comes. Take care yourself. TTx
That's great Tilda - just in time for the good weather too. I think the whole experience of being diagnosed with this 'thing' is life changing in so many ways as it does force a whole heap of things at you in such a short space of time. So a lot to deal with, and a lot of changes that you have to make - and trying to get back in control mentally, as well as physical side, is a huge journey. I don't keep as detailed a RA diary as I did at the beginning, but can now see that over time the number of days per month that I've been in good'ish shape has increased. And like you I put a lot down to managing myself better and not just the drugs. I like your description of singing as keeping you buoyant - we all need something that does that. A while back Gina K mentioned the whole idea of owning your own RA, and the old hippy in me says that finding a way to accept it (without giving in to it) does help. A different life than what I had planned, but I think your way of tackling it is a good inspiration. Keep on being sunny. Px
A lovely inspirational blog Tilda It's brilliant to hear that you're doing so well and in a better place emotionally as well as physically. It sounds like you're finally getting the right treatment and this gives me hope as I'm still in the coming to terms and feeling a bit morbid stage.
I also totally agree with what you say about diet and exercise. Since changing my diet in January and dropping just under 4st I feel so much better about myself. For me, losing weight has given me a focus when everything else has felt out of my control. Even though I'm still in pain I do feel healthier for eating a better diet, taking long walks and swimming regularly. Sometimes I don't want to go swimming because I'm feeling down but once I'm there I always enjoy it and feel my spirits lifted. I really hope you continue to improve and can enjoy your lovely scenic walks for many more years.
Paula x
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It's so nice to have someone else who is in same boat with getting control over life with weight loss and exercise Paula. We must have been similarly large and I do find it very empowering to be losing the final stone I've got to get off. It's weird having people walk past me in the street and then double take.. and tonight at choir practice the woman who used to share lifts with me said in a rather outraged way "Oh my goodness you've got even skinnier - how dare you?!"
But you and I know it's come at a very high price whereas they just think of dieting and exercise as a kind of luxury we can find time for while they are too busy. They don't know how much it takes to get to the pool and get changed and climb in or to a tai chi class when your bombed out with fatigue and aching all over!
Keep going Paula you'll get to this place once the MTX kicks in too I know it. Tilda xx
Hi Polly - how are you just now? You blogged a while back to say you'd had x-rays and other tests and had sounded quite fed up so hoping that you are feeling okay yourself just now?
I feel so strange because I can at last do things again that I've got used to not being able to do. Not sure why it's taken so long but I think I have to assume that it's the Hydroxy being brought in on top of the MTX now although it does say it will probably take up to 12 weeks to make a difference. But maybe it's brought out the best in the MTX in some chemical way? - I just don't know.
But I feel fundamentatlly different - not in the way I did when everything vanished last summer when I had a one off period and all the RA just lifted for 3 weeks and went away - but just in a rather gentle but firm way that does feel drug induced - not just a reduction in stress.
Anyway who cares why or how I just want to celebrate the fact that I can lift the kettle without anything aching now and I can open our front door handle without having to use my arm or look pleadingly at my OH. This feels like an enormous achievement - like the book "what Katy did" when she first started to walk if anyone's ever read that as a kid?! And it's only now that I can do these things once more that I realise that the low level pain was always there even when I wasn't aware of it. It's just hugely lessened for the past few days and I feel liberated! Long may it last and I'm blowing some of it all over the place across cyber space so you all might get some too!
Also middle son had his English Higher exam today so only has maths left on Monday and then that's it - and he turns 17 tomorrow which feels so old to him and to me!
I remember 'What Katy Did' as the story about an-ever-so-nice child and her trite observations on the world, I think you mean the awful Pollyanna and her unending cheeriness in the face of adversity, even when she got polio....but not sure I could bear to get either out of the attic to check!
Delighted if you could blow a bit of cheer over this way. I'm still waiting to get results of x-rays, and appts for physio and steroid jabs and a bit fed up of phoning hospital. Things aren't awful, just not as good as they were. So I have a horrible feeling that I'm slipping off my happy plateau and crumbling downhill again. Like you say, you get feeling of being liberated and I don't want to be put back in the RA prison. But it's manageable, so I'm trying not to whinge (not entirely successfully!). Px
Oh heck why did I mention that book - all I recall is that she fell off a homemade swing in a barn and was crippled and then decided enough was enough and in rather saintly fashion she made herself walk and surprised her family. Bei g a visual person I remember the fall off the swing illustration most but I no longer posses either that or Polyanna and certainly never inflicted them on my own brood! Middle boy had his higher English yesterday and chose Jeckyl and Hyde as his msin set text so our house has been covered in extracts and essays relating to split personality and Robert Louis Stevenson's excellent prose for months - sweeping it all up today and now it's just meaningless equations and x=y2 times a million - cant believe I have raised kids who are good enough at maths to take it at this standard having not even mustered an o level in it between me and OH?!
Sorry that things not looking so good your end Polly. Reminds me to live for the momentas graciously as I can muster though while the going is this good. I feel you need those biologics soon but I know that won't happen yesterday for you so I can only really offer you a warm cyber hug I'm afraid.
What a lovely long post. Here here you are doing brilliantly.
Keep them coming do use all good to read a good news story. Can I ask some things pleaase. I have synovitis in toes and i susspect ankle it swells and very sore. wont walking make it worse? 2 question. Do you go privatelt tp physio i was offered 12 weeks once a week at hospital which i di then it stopped cant repeat it. was thinking i may have to go private.
thanks keep singing you lucky thing i have a blokes flat voice lol
Yes I do feel lucky today Artyone. I know that I've felt pretty abandoned medically until recently and I think for all of us that being proactive is the only way to get what you need. So I have pushed GPs, OT, physio and rheumy for support - they aren't that accessible for me either. I was referred to physio ages ago by my GP. She saw me once rather reluctantly because I was still undiagnosed.
Then once diagnosed I went back to see her and she was really helpful and gave me some treatment for my hands and wrists which were especially lousy at that stage. She then put me down for some therapy and the physio dept in the hospital and saw me after that had finished. She also referred me to an OT from community health and care - who helped me a lot by giving me equipment to save my hands and wrists.
But then it all stopped and the MTX started working on my wrists and fingers. Since then I've had lots of small flares and one bad one and contacted her again twice - once through my OT re splints and once myself by email a few weeks ago about my ankle. She comes in twice to our local GP surgery and I asked her for an email address. I think others find it quite a long wait but she just pops me in to the odd free appointment and then gives me about 5 sessions on an apt card. She always says how difficult it must be to have RA and seems not to mind when I quiz her about what exactly synovitis means or how this or that works. I think it's helped me to come to terms with having RA - she doesn't make me feel like I'm wasting her time even when I'm feeling fine. But then I have no rheumy nurse and haven't seen the rheumy for six months - will see him again in a month. But for everything I've got I've had to push hard I admit so advise you get pestering too!
TT x
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Forgot to answer q.1 - no walking doesn't seem to make it worse overall, but then it only hurts if I walk on very uneven or sloping ground and is only a tiny bit swollen around the ankle bone. To be honest it feels quite different to the usual RA pain as its not acid burning pain just sharp as if I've twisted it like a sprain sometimes deep inside. I don't get visible swelling at all really though and my GP and physio are both sure it's the RA that to blame. Will see what the rheumy says when i have my telemed consultation next month.
I never worry I will make legs or feet worse walking on them because building up muscle around the joinrs and burning off fat is in the intersts of my joints so I tend to ignore pain in my hips and lower half unless it's so bad that I can't. Fingers I guard more carefully as the joints are tiny and they are my life!
It's inspiring to read blogs like this for people who are struggling.
I for one feel as though things will never improve when I am down, but your post has given me a much needed lift.
Thank you
Nic x
So pleased Nic as it feels like gloating to put a blog like this up and I know only too well that it might be temporary - but I feel that it's remission for now anyway and that never felt so good. I am blowing pain free time down honestly but it's got to get across a fairly turbulent bit of ocean before reaching you all - hoping it succeeds!
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It's brilliant to hear that you're doing so well and in a better place emotionally as well as physically. It sounds like you're finally getting the right treatment and this gives me hope as I'm still in the coming to terms and feeling a bit morbid stage. 
Crackling and snapping?
Feeling good
Good news - Psoriatic Arthritis progress!
