I'll take improvement

It's raining today, and I didn't know it from my hands. They're only a little sore, and I feel more like me again. My knuckles still feel hot and strange under the skin (I'm sure you'll know what I mean) but I'm feeling more heat and less actual pain. I'll take it. To hell with control. I need to get back to taking each moment as it comes. I want to rejoin my life and that, for me, means adjusting how I think. Better is good. All better would be nice, but so would winning the lottery. Piano still hurts, and I'll talk to the rheumy about it, but I've drunk my full share of self-pity and it's not doing me any good whatever.

I've registered for a pain self-management course out of the University of Victoria, and that starts in a few weeks. I'm beaten up, but I'm NOT beaten.

I realized the other day that while I'm not actively suicidal, I'd welcome the end of my life. That's not how I intend to live. I have always thought that all events in my life have a purpose, and that it's my solemn duty to find it. Time to start looking, methinks.


the determined

21 Replies

  • Good for you Bats! that''s pretty how much I feel, though I am considerably nearer what could be regarded as a 'normal' age to leave this mortal coil. I vacillate between relief and fear. The fear is not so much about death, but about the things I have left undone. I don't mean climbing Everest, but little things that would make life easier for those I leave behind. That's just my older brother (not in the best of health himself), a few grasping cousins, and a handful of very close, really precious friends. I'd like not to dump a whole lot of stuff onto them! I have a document on my desktop called Dying Tidily. I haven't completed it yet; i might start to get worried when I do and hastily write (Vol.1) on the cover!

    Life is for living, even if its not quite what we aspire to. Good Mevening Jo xx

  • Good Afternight, Jo. There is much I'd leave undone as well, and people I'm not prepared to leave yet. I like your document title, it'd make an awesome book. I'm still working on one called 'Things my Psychiatrist Never Told Me'. Today I'm enjoying the company of my Matthew and my cat today, and feeling like I fit in my skin. Things are definitely different, but my life has always been that way. You'd think I would be used to it!

    xx Bats

  • Aaah! Now that's the Azabat I've learnt to look up to and respect over the past 9 months.... the one with courage, drive and resilience:)

    I've been looking at EFT over the past week - it's a bit flaming weird but it maybe just be what I need to take my mind off my eyes which are a 'trouble' right now as I am at the end of one treatment and awaiting the next.

    I know exactly what you mean about not being actively suicidal but 'Oh lay me down and let me die' is an expression that comes to my lips in my own moments of self-pity fortunately these moments pass and the journey continues on. I have to confess this RA and the blepharospasm are proving 'fine', but harsh, teachers and I am definitely a better person for it in some ways.... It's a crazy thing this thing we call life!!!

    All the best


  • Thanks Ali, I feel like I've woken up after a bad dream. I know that I've been...refined by the harsh teachers in my life. I really believe that life is the process of refining the soul, sooooo I guess I'm going to be very refined at some point *grin*

  • Hi Ali

    I swear by EFT (in fact, I'm a qualified trainer, but have never used it professionally). I do it with various friends on Skype. It hasn't cured my RA, nor really lessened the pain, but it has helped a lot with the fear, self-esteem, anger etc. yes, it is weird, but somehow it works!


  • Sometimes you have to go down a long way before you can come up again. But you rise up changed, sometimes temporarily, sometimes in more lasting ways, but either way the change is often profound and in a sense, wonderful. It's often said but I do think this disease has given me a lot. I'm not in the mood to articulate what that might entail .... it's hard to describe. But the defiance is real and .... oh damn it (cheesy alert!) ... life-enhancing (that's the best I can do!). I'd still give it all up in an instant though to have the disease gone.

    So great to hear you talking like this.

  • Lovely post Bats,have you tried accupuncture as i have had it in my hands and neck and it has helped no end. I was due to have it last Tuesday,but she was ill and i didn't get it and boy do i know it,especially in my neck.

    I agree about dying,though i don't wish to die i don't fancy spending the rest of my life in pain. I am lucky in that i have a good hubby,but for anyone who doesn't have someone in their life like mine i can understand if they commit suicide. Having my hair and nails coloured and when someone comes up to me in the street to say they love them makes some of the suffering worthwhile. This happened to me yesterday,she was at work and ran out of the shop to tell me she loved my hair.

    You keep banging on darling and don't let this bloody disease beat you.

    Love me.xxxx

  • Hi Bats. I've not been on here for a while but it was good to read your post. I decided a while ago, in the absence of any help at all from my GP surgery, to chase up my Pain Management referral again. It had taken my GP a year to finally get this sorted and this was after my Rheumatologist finally intervening after much nagging by myself.

    The main reason behind me wanting to attend the Pain Clinic is that I have my right knee replacement surgery on 22 September and I really want to have extra pain relief should I need it!! The surgeon told me that he would refer me to the Pain Clinic following my op, so my thinking was to jump through the initial hoops before the event.

    I attended my 1st appointment with the Pain Management doctor some weeks ago and I explained that my plan was to get off as much medication as possible. His reply? 'Well, just stop'! He seemed rather taken aback when I told him that I thought that could be quite dangerous.

    With mixed feelings I decided to go on to the next step of the PM ladder which was a one hour group session (in a boiling hot room with no ventilation) with about 40 patients, some with partners/carers/friends. Luckily I had my rheumatology blood test card which I flapped furiously for the whole hour in a futile attempt to cause a bit of a breeze.

    That over, the next step was to phone and book a 10 minute telephone appointment, which I did. The purpose of this was to find out if the 1 hour session had been 'useful' and whether you wanted to go on to the next 3 hour session. Eek. Yes, I assured them it had been (!) and I wanted to attend the 3 hour session so was told I then had to phone to book myself on it! OK. I'm now booked for early September.

    Meanwhile, not following the advice of the PM doctor, I decided to bite the bullet and gradually cut down on my Butrans patches which I still had in smaller doses. I went from 20mcg to 10mcg to 5mcg and then stopped. Next was Gabapentin. I was on 600mg 3 times a day. I remember starting off on 100mcg once a day and building up gradually. Not being able to get to see a GP for two weeks I decided to drop down to 600mcg twice a day for a week.

    At this stage I admit to feeling quite liberated. Coming off the patches did not have any noticable effect on my pain but I was able to think more clearly.

    The Gabapentin reduction did not go so smoothly. I seemed fine even dropping to 600mcg once a day for a week so stopped altogether. WRONG!!!

    Very quickly I was nauseous, my body had real problems regulating temperature so one minute I was burning hot with sweat pouring down my face, the next I was cold with blue painful hands. I started having headaches (which I very rarely have) but on a plus note I lost half a stone!!

    This lasted for two weeks but by the third week I started to feel OK again. I would not recommend this form of withdrawal to anyone and although I'm over the worst I can't help feeling that the PM doctor was too blasé with his 'just stop' attitude.

    It's quite liberating though! I'm now reducing the Amitriptyline and last night only took 50mg.

    I'll let you know how the 3 hour group session goes. I just hope it will be a cooler day! Love to all xx

  • Have to say, you've done very well! I did reduce my pain medication before I had my knee replacement op, because I was concerned that I would need really effective relief after the op.

    I did this without reference to my doctors, it was really difficult because I was in agony with my knee (turned out to be avascular necrosis). I was on dihydrocodeine and paracetamol.

    I did manage to cut the dose, and felt it did help post op. However, the pain relief was great anyway, for the first few days I had slow release morphine daily, and oramorph as often as I needed. It was when I went home, back on my own meds that I found the benefit..... plus the fact that my pain actually reduced after the op.

    Hope your op goes well, but don't worry too much about the pain, I was surprised how well it was controlled post op. M xx

  • I had a similarly awful time coming off Duloxetine earlier this year. My GP said he didn't want me to come off it at all - if anything he felt I should increase the dose because I needed something for my peripheral nerve pain and we were "running out of options" .

    But when I pushed to stop taking it he said "well just stop then - you are only on a low dose anyway". This caused worse problems than trying to get off Prednisolone has recently - and I did feel angry about the doctors' attitude towards stopping an anti-depressant and also Gaberpentin. They don't seem to understand how seriously tapering off these drugs can affect us. In the end I took advice from a neuro forum and threads about Duloxetine/ Cymbalta and went back up to the higher dose and then emptied the capsules down the sink a bit more at a time over weeks. Even then I flared like crazy when finally off it. I read that it's because Serotonin is made in the bowel so for some people withdrawal can cause mania, retching and severe gastritis and awful headaches as it with did me. Give me talking therapy any day! X

  • I switched anti-depressants recently and the withdrawal from that was utterly vicious. I'm doing much better now, but I can definitely sympathize. 'just stop' is ridiculous advice, and he ought to have known better. Can you imagine if you'd stopped everything at once? *shudders*

    Do let me know how the group goes, mine starts in September. One of the things I'm really interested in is that once I've gone through the group I could possibly be trained to facilitate it. This sounds like something exactly up my alley.

  • Yes Azabat! When we moved here just over a year ago we were amazed by our new GP surgery. Yes, they're busy, yes they're understaffed but it doesn't stop them treating people with a bit of courtesy. As I said before, it took them a whole year to refer me to the Pain Clinic after telling me they could not change my medication. I admit to being rather gobsmacked to be told to just stop my meds!! I'll certainly let you know how the 3 hour session goes. I'm quite looking forward to it in a dreading kind of way! Meanwhile, I'm hoping I don't get Shingles. One (so far) of the triplet grandsons has chickenpox!! ToD xx

  • You r awesome bats, and certainly have inspired me.

    You have very eloquently written the ups and does of living with RA. Live in the moment and the rest will take care of itself.

    Have thought about a self management course myself, would love to know how u get on.

    Keep positive, when you reach the bottom the only way to go is up.


  • Good for you I was told by my dad over 40 years ago there's always someone worse off than you and me so take the bull by the horns and go for it x Dawn

  • I went for a walk today and went past a beautiful old Manor House that had "Concussus Resurgo" on the gates. Well I looked it up when I got home and it's the Latin for something like 'knock me down and I bounce back'. So I reckon that's your motto.... Well done you for recognising where you are & trying to do something to deal with it.

  • oh, I like this very much! I think I need a family crest :D

  • Good for you Bats! I loved your post and positiveness. And I must say, I loved all the responses to your post. What a lovely bunch we have on this site. I look forward to reading each and every post each day. Thank you all!

  • :):) :)

  • ;) :) :) xx

  • Lots of brave people out there, forging onward and looking after themselves. Take care, Doreen

  • I agree this is a great post from one brave woman. It's all about taking back control I believe. This is what our attempts at self management are for and I think we reach an important moment when we attempt to climb onto the horse (metaphorically) and take up the reins. Keep focussed on playing the piano again Bats - a great goal which I'm sure will be achievable for you with your determination.

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