What happens when you’ve got, when you’ve had a stroke, well, this is how it’s, it feels to me, it feels as if you’ve got half a dead body, maybe you’ve had an accident and half your body’s got sliced off and then somebody’s stuck it back on because it’s there and you’re learning to walk on it like it might be if it was an artificial leg but it’s, it’s not there right. It’s, it’s just, I mean, it’s not there correctly. It’s as if this horrible accident has happened and somebody’s stuck half a body back on to me but it’s not mine and it doesn’t connect up with anything and so if I’m thinking like getting back into bed in the morning if I, if I’ve got up in the morning and I’m thinking of getting back into bed with my husband and snuggling up, it’s, it’s not like it used to be because that half of my body can’t snuggle up to anybody any more. I’ve only got this half and that half is, is OK, that half is just the same as it was before but [ooh, beg pardon] it’s too overwhelmed by the left side. It’s, it’s as if the left side were actually much bigger than the right side. It’s as if maybe my hand and my arm are alright but the rest of my body’s dead because although I can see and feel logically that it’s actually only half my body, it doesn’t feel like that because it’s like, it’s like a dead weight and, and it’s a dead weight that can’t be comforted. I used to have body massage quite often before I had the stroke but I’ve only had one since then because being massaged on my left side is just not worth the effort. It’s worse than nothing because it’s a constant reminder that all this dead flesh is, is stuck there and because it’s a constant reminder of that, it makes me be quite uninterested in the right side of my body being massaged.

Can you tell me a little bit more about the sensation and the movement coming back, how that was?

It seemed, it seemed to be at that time, I mentioned my leg in bed, earlier. That was, the third week of the illness’ I tried to turn over in bed and I felt this lump, a virtual lump, if you like. It was like a lump of wood and I got such a shock, you know, it really was. Once, once you realise, ‘That’s my leg. It was totally dead and I remember, again in the early days, the doctors used to come round and say, ‘Move your left toes’, you know, the toes in your left foot. And I moved them. ‘Move the toes in your right foot’ and I thought I was moving them and it was just days later, I’d think, you know, the doctors were saying, ‘That’s good, that’s good, you know. And I’m saying to myself, ‘Did these toes move or was it my left toes that moved again?’ you know. So there was absolutely no feeling whatsoever. I had no control… reading a book. I couldn’t read a book. You know, I’ve loads and loads of books and I’ll read anything, magazines, papers, you know. It was such a chore to even turn the pages. I had no control what, no control whatsoever in turning the pages. Even a paper lying in my lap on the bed. My right arm used to lie across the page and I couldn’t work out why I couldn’t turn the page, you know, because I couldn’t feel, to me, my right arm wasn’t lying there. Now, a really, really queer sensation, you know. To me, my right arm wasn’t lying there and it’s just when you realise, again, it’s a shock. It’s a real shock to your system, you know. You think, ‘God, my right”, it was because my right arm was lying across the page that I can’t, I can’t turn it, you know. It seems so simple but, it’s hard to explain, you know, its. But the bottom line is it’s a real, real shock to your system when you realise exactly what’s, what’s wrong.

Tell me about that? How does it feel, your leg, and is your arm as well? How do they feel?

Yeah. My arms as well. You can’t describe it. It’s just as though it doesn’t belong to you. Theres no feeling. Well, there is feeling because I can feel hot and cold but I can’t feel us moving it or whatever, you know. It’s very, very hard to describe what the feeling is.

How does it feel when you’re perhaps in a bed? Does it feel, perhaps when you wake up?

Well, you don’t, if I put my right leg on top of my left one, you can feel the heat off my, my right one because this ones always cold. The left ones always cold and my left arm, if I lie the wrong way in my bed, turn round the wrong way, if I lie on top of that, it’s, I have to sometimes waken my wife to, because I can’t get my arm out to, because I feel pain lying on it.

You said you went into the stroke unit to start with, can you just talk about what, you know, what happened when you first went there?

That was tough. That was really tough. I was put in intensive care for the first few days I wasn’t allowed any medication at all and I had terrible muscle spasm in my, paralysed arm and my paralysed leg, all the time. So that I couldn’t, I couldn’t sleep and they couldn’t give me anything, to help me sleep because I was under observation for 48 hours and that was awful, really awful. That was so uncomfortable because I had, the whole, the right hand side of my body had disappeared. I mean, that’s what happens. I no longer knew I had an arm and a leg. It had just gone, vanished. I didn’t have one anymore, except it kept, they kept moving without me moving them, and it was very uncomfortable all the time. So, no, that was, that was very unpleasant indeed actually. I was desperate to get out, and into the main ward.

Did you get any help for the muscle spasms?

Not when I was under observation, no. They can’t give you, me anything. But when, as soon as I got out of, observation, yeah, they gave me some drugs that helped my, the right hand side of my body to stop spasming.

Do you remember what you were on?

I know what I’m on now. I still take it but I don’t know because, I mean, the medication is handed out in, hospitals and rehabilitation units to you in a little pot and you don’t know what it is and you take it and obediently swallow it, so, I, I know that I was given medication ongoing for muscle spasm in my, arm or leg. Yeah. Muscle spasm is, is a nuisance, to be quite honest. Yeah. And I still suffer from it.

So what do you take now for it?

I take a drug called baclofen now, which I’ve been taken for quite a long time, which I find does help. Yeah. Because it drives you insane, a muscle spasm. It’s always at the end of the day, at night, when you’re really wanting to relax and your leg suddenly decides it doesn’t want to, and you want to tear your skin off because it’s actually inside and you want to itch everything there is inside your leg. It’s, a most irritating experience.

You mentioned throughout about information. What’s important to you about getting information about stroke?

Well, for instance, when I had when I first discovered I’d got post stroke pain, I discovered that the occupational therapist that was treating me at the time had never heard of it and I don’t think the GP I was seeing at the time had ever heard of it and I only heard of it because I asked for information about frozen shoulder and the information, the booklets, the very good booklet that the Stroke Association sent me about frozen shoulder was mainly about central post stroke pain. I think frozen shoulder is part of the whole thing of it and incidentally that only happens if you’re not in a stroke unit and the nurses where you are don’t realise that if your arm isn’t laid in a particular way at night when you go to sleep and you lie on it, you will get a frozen shoulder but there are hardly any stroke units and so that would be something useful to know in case you go into hospital [laughter] because a frozen shoulder with central post stroke pain is the most terrible pain. It’s the most terrible pain I’ve ever had.

WifeHe used to always think his feet were wet. He would say, ‘My feet’, and the doctor said it’s just , it’s the stroke, yeah ‘ It’s his mind playing tricks on him.

HusbandAye.

WifeThere was one night when [laughs] I got him into bed, you, that’s usually when he said that, ‘My feet are soaking and I’d say, check, I’d say ‘How could your feet be wet? They’re not wet. So I went away to bed but he had me up and down till about 12 o’clock at night about 40 times shouting that his feet were wet, you know, I had to keep going through and tell him they weren’t wet and I would just get back to bed and he would shout they were wet. But it’s just his mind. I don’t know.

And you wear a glove now, is that because it’s numb?

Pardon?

You’re wearing a glove on your hand?

It’s because it’s numb and cold. Never really gets warmed up. Though if you feel it, it will be quite normal but I find it’s cold. Mm hmm.

And so do you wear the glove all the time?

I wear this one glove all the time. It, I don’t, this ones alright, you see. And when I don’t wear it’ if it gets cold, it gets sore. So I just wear it, you know. Do my finger exercises and it hasn’t really changed very much for quite some time. It still keeps the same pace but I don’t know whether that will come back or not but I certainly do my exercises and hoping it will come back, you know. But it could be worse. I mean, that’s not a great disablement. It’s just I can do my finger exercises. Mm hmm.

My disability isn’t one of, of non movement. It’s of chronic pain in, in my left shoulder and down my left arm. It started ironically probably about 10 or 11 days after the stroke. There was no pain at all initially, lots and lots of confusion and, and lots of flashing lights and whatever but no pain at all in my body. Just a sense of weakness, not being able to use my left leg and arm. That co-ordination came back very gradually. Physio improved my leg enormously. When I got back home, I was very, very rigorous with my exercises and really, really pushed it and my leg now is much better but the pain in my arm is something that hasn’t changed really since about 10 days after my stroke and I can remember waking in the hospital and thinking I’d dislocated my shoulder because it was in, I was in so much pain and the consultant who came to see me had, well, hed actually sat down with me and explained that he didn’t think it was a shoulder dislocation. There was nothing wrong with the limb itself but because the clot within my brain had hit the thalamus, which is a little bit deep inside the brain which I believe controls pain receptors, sends pain messages and receives pain messages and part of it had been very badly damaged. They do not know where the damaged nerves actually are so they cannot repair them but they seem to think that the pain senders are sending my body constant messages telling me that I’ve got pain in my left shoulder, although I haven’t. The shoulder is perfectly good, it’s a good working arm but for some reason obviously my body thinks it’s in chronic pain all the time.

I’ve taken various things. I started off with amitriptyline which is the most effective drug I have to say which reaches the back of the brain, which reaches the nervous system and that does have an effect but it does have side effects in that I had a horrible mouth problem. I think you get a dry mouth with a lot of this, these particular drugs but mine developed into a, a really bad condition and I had ulcers and my tongue was swollen and I found it very difficult to eat and I’d been taking that drug for 5 years when this sort of erupted and so therefore I had to leave that one behind. I take gabapentin, I take the full dose of gabapentin, which is very, I suppose is very good, must help, it’s a sort of muscle relaxant because that is really one of my big problems is the fact that because my leg goes into a spasm, my brain is sending negative messages down to my left side saying that I have got pain when in fact there is nothing wrong with my leg, I know that, but it goes into a spasm, the spasm goes down into my foot and that makes walking extremely difficult because my toes tend to sort of curl up underneath and then you have to walk on, on, on your toes really and that, after 7 years, has sort of made my toes permanently bent and therefore walking is very uncomfortable. So what I do, it’s really weird thing I suppose, I bind my foot up with tape all round the toes and on the base of the foot and therefore when I put my foot on the ground, it deadens the pain and if I’m going walking in the shops or something like that, I find that that will help me. That, that deadens it a bit and I can walk a little bit more than I would be able to normally.

I’m on medication for the condition which is known as central post stroke pain but it hasn’t been effective in my particular case, it hasn’t made any difference at all to the pain levels. It’s something that it’s, it’s a pain that’s very, very hard to describe. Having had pain before, childbirth and so forth, it’s something that is over and done with and it’s a mean, you know theres a finite end, you’ve got it for a period of a block of time and then hopefully it will go. This pain has been here for a very long time and it’s something that has been, now become part of my life in the way that I have to lead my life and I have to adapt to the way I live around it. It causes me a huge amount of wasted energy fighting the pain because I want to do things and I’m physically exhausted and can’t do what I want to do with my children. I haven’t slept a full night through since the pain started, which was 2 years ago, because I’ll find I’ll get to bed and it’ll wake me and it feels at its worst as if somebody’s trying to pull my arm, twist it and pull it away from my body. I’ve no perception of where my arm is at this point. It’s as if somebody’s put a spear and turning it deep inside my shoulder, all down my arm into my lower arm and into my hand and I have to, I’ll get up and I’ll do my physio or I’ll have a hot bath.

Sometimes I won’t stay upstairs because I’ll wake my daughters. I’ll come down here and I’ll, I’ll even wash the kitchen floor or, my right hand, fortunately I’m right handed, I, I’ll do ironing. It’s mind over matter. You have to not let it beat you. It’s something that you just have to get through in a way. There are certain things that make it an awful lot worse and I avoid them cold. I can walk past a freezer in a supermarket and it’s as if somebody’s put a knife through my shoulder. It’s there all the time at different levels. At its worst, it’s like your worst nightmare, it’s something that I couldn’t begin to describe because I’ve never had pain that bad before. It’s as if, it’s frozen. I’ve never been skiing and I’ve never had frostbite but it’s so icy cold all the time deep in my shoulder, it’s as if it’s on fire and that’s, that’s a really ridiculous way to describe it but it feels like frostbite constantly in my shoulder and down my arm so it has completely, completely changed my life, the pain that the stroke itself means to pain to me because it’s the only deficit I’ve unfortunately been left with. At the moment, there isn’t really any other treatment for it. I’ve tried reflexology, I’ve tried acupuncture, I’ve tried hypnosis. To be honest, I’d jump off a cliff naked if somebody said it would work and I’d even got to the stage where I’d been to see my family doctor and wasn’t coping with the pain and was under stress, also, in different areas of my life and that impacted greatly on the extent of the pain and the depth of it, the intensity is far, far worse if I get very upset. I’ve known, I’ve no idea why that should interact but I know from my experience that if I get worried, stressed, very upset, my pain is a thousand times worse or maybe my ability to deal with isn’t as good. So I try and avoid the things that I know will make it worse.

It’s not an easy pain to live with because it’s not constant, it’s here all the time but then it can come in a quick sudden surge for no apparent reason and literally wake me from a deep sleep and, and I’ll wake and I’ll just, I’ll just be rocking, as you do with cramp when you have to wait for it to subside and then when it gets past that intensity I go and I do my physio or I’ll have a bath. I feel, I found that relaxation tapes help enormously that I, I’ll do a set of physio and then I’ll put a tape on and I do find that very, very positive and very therapeutic.

Right. So a sublaxation in the shoulder is where, it’s basically where my arm’s pretty much dead and it’s just a dead weight and it was just hanging all the time. Almost like the joint open a bit in my shoulder that works the muscles and that or if it’s a tendon, then things around the joint would pull the joint quite tight and keep your joint quite tight. The bone and socket in your shoulder, mine just sort of dangles out and they did actually show me when they examined it, that you can actually feel a gap in, in the joint. I can’t actually feel it now but the physio did sort of show me where the feeling, was able to actually, so I could feel it myself, the sublaxation. So I wear, sometimes wear a sling just to support my arm, just to support the weight of my arm rather than take the painkillers for that.

But it seems to mean that over time now, the range of movement in my arm, even if I just try and lift my arm up myself, I can’t lift it as high as I used to be able to because the shoulder, shoulder pain is restrictive. But it’s really, I think, just down to the dead weight of the arm just dangling, pulling on the, on the joint all the time.

And how do you manage with the pain?

Well, I was taking the painkillers but they used to make me a bit confused and a bit knocked off, so I, I cut those down. I used to take them 3 times a day but now I just take them at night if I’m in particular pain at the time. But otherwise I just take paracetamol which works adequately.