Phantom limb

I feel like being healthy got surgically removed, and I ache where it ought to be. I just had to step down from the board of an organization I really love. They take people with disabilities of all sorts and all levels (including me) outdoors. We're not just talking little walks here, but up mountains and cycling and kayaking, and hiking...hell, I've even gone rock-climbing. I've been their speaker and publicist, but between the RA and my last brain injury, my stamina and mental acuity (not to mention the pain) have made all of that more difficult. I'll be joining a participant committee instead, and I'm going to remain a participant, but I miss the feeling of being *competent* so desperately. My hands and my wrists and my elbows and my knees are all complaining as I type this, and my poor foggy brain hunts down words and pins them to my screen. They don't just come, any more. I keep waiting for my do-over, for something to go 'ha-ha, just kidding' and give me back myself. It was still a blind self, still an ageing self, but how can I possibly become content with this new self? I ache today, I miss my health so much. I feel like I'll crumble at a touch.


15 Replies

  • Bat, I know just how you are feeling.I have been fine all day I have paced myself taken my tablets and not over done it at why an I sitting here with my arm and shoulder in absolute agony? My fingers are swelling up like sausages before my eyes.

    I hate it when you feel ok one minute and the RA creeps up and bites you. I have only recently been diagnosed and I must say I hate the way my body just hurts so much. I want To look for a new job soon, but how can I work when I'm in so much pain?

  • 'Why' is one of those questions that gnaws at the spirit, isn't it. I've been a volunteer with my organization for a decade now, and I don't know what I can do for them, either. The weather has shifted, and I'm watching my hands swell up again too. I'm so very glad we have a place where we can just be honest and in the moment about it. I will find gratitude, I know, but right this minute my body is the enemy. *sigh* Warm hugs for you, I wish I had thoughts on work for you, but I don't know. The one thing I can say I've heard is that it takes time for the meds to help. I see my rheumy on April 13th, but I'd let yours know that your symptoms are unmanageable. My gp is the one prescribing my pain meds right now, just to get me through till then. More warm hugs, just coz we need 'em. xx

  • Heathersmum, did you see the reply to you I left of Bat's other post "Balloon Fingers"? I would certainly report this to your Rheumy team or nurse. Try & see if dangling your arm over the arm of a chair eases it somewhat. It will release the median nerve if it is carpal tunnel.

  • Hello,yes I did read your reply .Thank you I will mention it to my rheumatoid consult. And I am going to the Dr tomorrow for a check.

  • If only to rule it out or confirm. If you have active disease & it's left it can worsen & cause real problems so the sooner it's reported the better then your Rheumy can decide if a referral is needed.

  • It's awful when you find you need to give up something you take great pleasure in isn't Bat? But you're a fighter, that's apparent in all you've gone through yet still write perfectly coherently (though of course we don't see you searching for words!) so I'm confident you'll find something else to replace it that doesn't take quite so much out of you. I feel for you.

    Just a thought, because typing was causing finger problems I was bought a touch screen tablet which I find far easier on my fingers. Could be worth checking out? x

  • I may have some funding available to me through the Canadian National Institute for the blind which would get me not only the tablet, but also speech recognition software. I'll be checking that out next week. I'm definitely a fighter, I can't seem to give up even when I desperately want to! It's hard to let this go, but I think I will find other paths. It just hurts to give this one up. x

  • Well, that's great! I hope you do it's made a big difference to my fingers & if you can get speach recognition software too that would be a big help too I'm sure. I have google speak (think that's what it's called, wouldn't you know it I'm on the laptop just now, tablet's on charge!) & it's very accurate, unlike the early car phone voice recognition packs.

    You'll channel you energies into this other committee I'm sure & look on it as an new achievement not a step down.

    I hope your body is rested enough to feel somewhat different today. x

  • Oh Azabat, that really resonates with me ...

    I have had to let go of chairing a large open studio group in West London. I still paint, when not in too much pain and when I have the energy, but it was 'my baby' and I'm not good at letting go, even when I know it's in my physical interest to do so. I feel the loss of usefulness, and status, if I am honest.

    Not nearly as physically healthy as your activities, which sound wonderfully Canadian! :). I used to be a rock climber in my youth, which I find amazing as I am scared of heights now!

    Do I understand that you are blind? I am partially sighted. I gained a MA when I was sixty. My thesis was "Do visual artists need to see? exploring alternative perceptions". It was a fascinating journey, during which I met one completely blind artist who gave me the courage to have a high-risk operation . It worked and I now have clear vision, albeit only in one eye.

    You say the words don't come any more. of course, only you know what it feels like from your side, and I am not trivialising your subjective experience, but I must tell you that I have never read a more elegantly worded post than the one you wrote yesterday, about keeping it in the moment. And even today's, written in pain and grief, is beautifully expressed. I would rather you could be expressing something joyous, but don't throw the baby out with the bath water.

    it is a bereavement, you are hurting in all sorts of ways. i felt that so strongly that I welled up in sympathy.

    Please me kind to Bat. a transatlantic hug. Jo x

  • I have 2 degrees of 20/60 in my left eye, and 7 degrees of 20/20 in my right. My strokes put pressure on the optic nerve, so though my eyes are completely normal my vision is not. I'm applying for a guide dog but it's a slow process. I love the idea art by the visually impaired. We have several blind artists in the area who create work also intended for those with vision impairment. I haven't picked up my paints in a long time, but I'd like to try.

    It's been such a battle for me to find ways in which I'm useful. I've been collecting a disability pension for a very long time, and I've considered my volunteer work as part of how I pay my community back. When you mentioned losing status, that resonated for me, too. I have taken pride in what I have to offer. It has been an honour to serve on the board and have a hand in steering the ship.

    It's good to know that my words still work, it's just harder to corral them than it used to be, and I have a novel under way that overwhelms me by its existence :P Thank you for your kindness, and I will try to follow your example. trans-Atlantic hugs back xxx Bat

  • I so relate to your posts Azabat. I know that the volunteering I've been doing over the past year has both got me through and brought me to my knees in equal measure. When my GP was round here a week ago when I fainted - he asked me how the volunteering in Shetland a few weeks ago had gone. I found enough voice from my bed to tell him a little of what I'd been required to do. I think he thinks I can't be that unwell if I've been doing all this level of work. He stared at me strangely when I was explaining - maybe he was feeling sorry for me - I just couldn't tell. None of it is clear cut and we have to make some really lousy decisions.

    I also am feeling very sad tonight because I've been in a small chamber choir for many years now and tonight they are rehearsing for a big fundraising concert on Saturday night which I organised. The music is going to be some of the loveliest we've sung to date and the members are all recovering well from the same bug as me.

    One is just out of hospital after a hip replacement and is going to be sitting down performing. They are all rallying round him so that he can sing. No one has even asked me how I am. This is the nature of chronic illness I suppose - people lose patience and sympathy.

    They probably just think I'm opting out because I'm still not quite recovered. They don't know how sad I'm feeling just now about this - no idea at all. I'm hoping I will maybe be able to get to the concert on Saturday night and help out behind the scenes with coffee and cakes and raffles. I daren't suggest this though because I can still only just about walk to the bathroom without feeling horribly dizzy and exhausted - still not really eating much at all and still coughing - so I fear spoiling the concert for others - even though I should really be over the worst by Saturday.

    But there's no way my voice will have returned and also no way my jaw will be able to open wide enough to sing.

    It is like losing the healthiest part of us I know.


  • Poor Twitchy. That must be so painful. I can really relate to that.

    I'm having to learn to be my own best friend.



  • Many hugs, T. 'should' seems to be a word designed to inflict guilt and sorrow, no? *sigh* Be gentle with you, please? How you feel matters, and I think perhaps people don't so much run out of sympathy as get paralysed by the inability to help. It does feel like losing the things I value about myself, and I've had to fight hard for them. xx Bat

  • Well as Jo rightly says you may have lost some things but we have certainly found your posts a joy to read - so your skills are not being lost or wasted at all. There are many ways to give pleasure and derive comfort I'm learning. Tx

  • Thank you T, it's so good to find a place where I feel like I fit. I need that so badly right now. xx

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