There is no name for it

It was just another evening, like any other, we were settled together on the settee, watching our normal Monday evenings programmes, but it wasn’t normal, I had a problem. For the last few days, I have been getting a lot of spasm in both my legs. It started with my left foot, as I mentioned a couple of days ago, then my right leg joined in. They have varied from mild to totally disabling, with no pattern or connections. Thanks to years of training, years when no one wanted to believe that I was really ill, I am incredibly good at covering up the majority of the effects. When people disbelieve what you are telling them, what they can see with their own eyes, even when any other idiot can see you are in genuine pain, they just roll those eyes and walked away. It was a reaction that I couldn’t deal with, as there was no reason for it. Ask anyone who really knows me, if there is one thing I hate, it is lies, so why would I lie in such a way, what did I have to gain from it, absolutely nothing. Trust me, there is nothing so painful as that, but I lived with it for years, and it turned me into a great actress. If they didn’t know it was happening, if I could cover it up, then life just went on as normal, all hidden and all ignored. In an odd way, I am now grateful to them, as they taught me something that I have found invaluable. For a totally different reason, I have always done my best to hide the worst of my illness, from Adam. He is both the greatest worrier, I have ever met, and the most loving and caring person, that I have ever met. Not long before I started on my Chemotherapy, which totally transformed my health for several years, I wasn’t in too great a condition, and I went through a several traumatic events. I saw how it affected him, and I swore that I wasn’t going to upset him, more than was totally unavoidable.

That though isn’t the full story, on top of how Adams reaction distressed me, there is something else, something that is far more difficult, and I never expected it. To call it embarrassment isn’t giving it a strong enough name. It is a feeling, that is much deeper and much more painful, almost as though being seen in distress, is something that damages my actual sole. I can bear the pain, but I can’t bear others seeing me in that state, and it doesn’t have to be pain, just any of the short-lived, violent reactions my body has, to what is happening to it. I would sooner spend time and energy, fighting to get off the floor, than to call for help, and no, it isn’t pride either. I don’t believe there is a name for it, well not one that I have found, as it’s so much more than any possible one I could apply. So what happened last night, didn’t leave me disappointed, or shamed, or mortified, it was closer to being destroyed by an atomic bomb.

Adam had gone ahead of me to the kitchen, it was coming up to 8 pm and time for my medications. My legs had been bad all day, I had been silently sitting there on the settee, shifting about a little, but trying to keep them relaxed and quiet, and mainly failing. As far as I could tell, Adam hadn’t picked up on my discomfort, he often does, but last night, he hadn’t said a word. When he left the room, I took the opportunity, to apply some force, to the worst areas, and gently massage a couple of others, before sitting on my wheelchair. I hadn’t managed to do a great job, partly because I didn’t have the time, and because it wasn’t only my legs that were causing me problems, my arms weren’t great either. I made my way slowly to join him, and I was soon sitting there using my nebulizer. It had taken me a little longer than usual to set the whole thing up as my right calf muscle was in a mid-range spasm. Despite sitting there applying my relaxation technique, the pain in my lower thigh suddenly went off the scale, them my ankle joined in. It was impossible to stay sitting, and as the pain shot downwards from the back of my knee to my ankle, I pulled myself up into so that I was leaning in the corner of the kitchen units, using them to cradle myself in and to take my weight. There was no hiding my pain, not only was I totally vertical when I should have been sitting, my face, and my voice had joined in with the more silent screaming inside. I couldn’t deal with the nebulizer as well, so I switched it off and stood there swaying back and forwards.

My left leg wouldn’t hold me, I fell back into my wheelchair and it was then that the pain in my ankle entered my foot. Adam shot around the end of the counter, into the main part of the kitchen, desperate to do something to help me. Then the pain got even worse. I was grasping the armrests of my chair so tightly, that I am surprised that I have a single nail left, they should have popped and snapped, with the pressure I was applying. I couldn’t even keep myself fully seated, my back was arched and I was twisting from side to side, in a vain hope of finding where the true trigger point was. By this point, my leg was outstretched, and my foot was pushed against the kick board, lifting me clear of the seat. Just as I have found in the past, one spasm triggers another, there were four main areas and as one eased, the next tightened again. Adam had dropped to his knees and was desperately trying to massage it away. For some reason, he seemed shocked, that he could feel the tension and tightness of each muscle he touched. He kept telling me that the muscles were solid and tendons pulled tight. As the pain shifted, he followed, it was so bad that I couldn’t sit still, or even keep my vocal cords, from expressing how it felt. I was talking to him and myself at the same time. Telling Adam where the pain was worst, and myself to relax, and most importantly, to breath. I am not exaggerating, it was the worst, spasm pain, I have ever had in a limb. He was working on my leg for a full five minutes, the whole time, I was fighting with the desire to grab a knife from the draw, and to somehow kill it. I felt totally under attack and there was nothing Adam or I could do. Then it broke. One by one, each area settled back to pain, rather than agony. Spasms don’t just go, they subside, leaving behind a shadow pain, as though you have been beaten up.

Earlier in the day, I had had an extreme attack in my left leg, nothing like that one, but bad enough that I was still able to feel it’s shadow. All I kept thinking was “Thank God, that it didn’t join in as well”. I sat there for a few minutes, just settling myself back to something close to normality. As I was about to go back to what I had been doing before it struck, I thanked Adam for his help and adding “I don’t like you seeing me like that”, he gently touched me on the shoulder and quietly said, “I know”, then he to went back to what he had been doing. There was really nothing else to be said, and I didn’t want anything said either. There is no reason on earth, why I should have felt as bad as I did, there was nothing I could have changed or done differently. There was nothing Adam could have done differently either. I was going to feel the way I felt regardless of anything either of us did, or anything anyone else might have done either, and I’m not talking about the pain in my legs.

This is part of my dread of the future. This is why I fear the point where these things will happen several times a day. Not just spasms, but the hoard of nightmare things my body can, and will do to me. I know that it is something I am going to have to get over, because that is my future. There isn’t any chance that life will continue as is, it is going to get worse. All those isolated events from the past thirty years, those events that have left my memory scared, will happen again, and again, and again, and without a doubt, there will be a few I haven’t even considered. All of it is going to happen in the sight of others. There will be no hiding, no acting or game playing that will hide it, and that to me is one of my nightmares. Don’t tell me to stop being stupid. Don’t tell me that it’s not my fault. Don’t tell me that it doesn’t matter. I KNOW. But I still HATE every second of it, and there is no escaping it. I have had people ask me what is the worst things about living with PRMS, well this is without a doubt one of them. It is a hard mental battle every time that it happens, and it has hardly even started.

Please read my blog from 2 years ago today – 03/11/2013 – Just a little control please

So many days just seem to bleed into another, nothing to define them from each other once you are no longer working. I woke this morning as I do quite often totally lost as to which day…..

4 thoughts on “There is no name for it

  1. NO COMMENT; JUST HAPPY THAT YOU HAVE ADAM. THIS MAY SOUND MEAN BUT IT MAKES ME APPRECIATE THAT I’M NOT YOU. MY HEALTH IS NOT AS BAD AS YOURS AND MANY OTHERS, NOT SELFISH, JUST APPRECIATING THE LITTLE THINGS IN LIFE

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  2. Dear Pamela, I also have MS, am married to a younger healthy guy, Jeff, and have been mostly homebound since 2001. I was diagnosed with COPD (bronchiectasis) several years ago, and have been on supplemental oxygen 24/7 since 2010. As you ‘ve pointed out, MS can and does strike whatever part of us it pleases. It also took the hearing in one ear. I am your daily reader from Seattle, Washington (sometimes it says Renton, WA on your blog). I think I’ve read every post you’ve written since finding you online a few months ago.I think it is a touching and valuable body of work that IS the book you wanted to write. It should be read in its entirety by doctors, who would learn more than they could from a body donated for research. post mortem.

    My spasms occur in my toes, and just that tiny bit of body produces pain as bad as any I’ve had from burst ectopic pregnancy, dislocated ankle, etc; these are worse. Each attack had been the same exact scenario: at home, barefooted, my toes suddenly stretch apart. I drop to the floor and cry out at the top of my lungs for Jeff to come help me. HELP ME!! When he gets there I yell DON’T TOUCH ME!!! Any movement or touching would make it worse, I know without trying, and I never want to find out what worse would feel like! As you said, you CAN’T suffer silently when spasms strike. Yelling and carrying is all I can do, and venting in this comical way does seem to help. But only because they are mercifully short. Medication can’t help me, because the spasm is over before it could take effect. Some people with MS have an indwelling port with a so-called Tegretol drip which prevents spasms…could this work for you?
    Best from Vivia

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    • Hi Vivia,

      I read your comment last night, but I was really tired and decided to leave it until this morning to answer you. I recognise totally you description of the separating toes. It’s one I have lived with for years, but thought was peculiar to me. I was born with curly toes and Hyper mobility syndrome, so I had thought that they were behind this strange movement which was turning into a spasm. Clearly not, I’m not sure if that’s a good thing or not, often it helps to share, but knowing how painful it is, I think not.

      I think I am right in saying that the Tegretol drip is for those who suffer badly with electric shock pains. I could be wrong, but that was my understanding. Like you, most of my spasms in my limbs, last only minutes. The long lasting one in my chest and intestine, are mercifully much less painful normally. The do though, hold the record for the worst pain ever and again it was short. Because I fear the future pain so much, I try hard to stay on as low a dose of everything that I can bear. I don’t want to build up a high tolerance before I actually truly​ need it.

      Thank you for your incredibly kind words about my blog​. To me it’s just a way of dealing with life, but, I do remember in my first year of writing actually wishing that a doctor might read it in the future and suddenly see the light. I don’t think it’s their fault that they don’t understand us. Unless you live with it or are the partner to someone who does, understanding is almost impossible. Their job is to know the fact, and if you read the list of symptoms, well it tells you nothing. I don’t think there is an easy answer to any of it, I just dream of the day that they won’t need to understand, because they can cure us.

      Take care
      Pam xx

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  3. God has surely provided you with Adam and we will thank Him for Adam in our prayers. I will save this to desktop and ask Mark to read this when we arise. Your burdens are great and I am grateful they are not mine. I have had different and serious burdens – unseen to others except to God and He has helped me overcome together with assurances of comfort and love from my special daughter-in-law Donna. We will pray for you together.

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