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…..

It’s not hard, it’s life

My arms are dead. Well, clearly not dead as in that I can’t use them at all, but dead when it comes to wanting to push my wheelchair. Ever since I started using my chair, I have had this odd period between 8 pm and 10 am, where they feel like lead. Just like lead, they are heavy and feel like if I try to apply to much pressure, they will bend in all the wrong places. At first, I thought it was just that I was tired at night, that the muscles had simply had enough after having to move me around all day. That was until they started exactly the same thing, in the morning and then around my afternoon nap. It is so extreme at times that I have actually felt the change between awake and dead happening. I had only been laid down for a few seconds when I clearly felt this odd numbness forming at my neck, running across my shoulders and down into my arms, then on into my hands. It was exactly the numbness that makes using my chair so hard. Once it has hold, they are gone until I force them back into action, something that takes about half an hour to fully shake off. The longer I am using my chair, the worse it is getting. It’s only a guess, but I can’t help wondering if I have upset the nerves at the top of my spine, as the way they shut down, points far more to a nerve issue rather than a muscle one. My PRMS forced me into this stupid chair and now, well now it’s working on making it impossible to use.

This morning, they just don’t want to wake up and every time I have to go anywhere, they are so flipping useless that all the effort is having to come from my shoulders and upper body alone. My arms are more like pistons fixed to the wheel rims, rather than assisting in the process of pushing. It isn’t helped by the fact that I woke up today with my right hand feeling like someone had put it in a vice overnight. Holding onto the wheel rim and not letting it slip is hard. I have already today managed to pull several muscles in my right arm, in around my armpit and side of my chest and it’s only 9:30. Some mornings, you just want to crawl back into bed, not because you are tired, but because you simply can’t be bothered with all this shit. I don’t feel like that too often, but today is one of those blue moons that are just that bit bluer than normal.

One of the reoccurring things I have picked up from comments to my blog, right back to the beginning and right up to yesterday, is the opinion of some, that I am extremely hard on myself. On mornings like today, I almost agree with them. There is no reason on this earth, that I can’t just follow that feeling and jump right back into my nice warm bed. Yet here I am, sitting right where I always do, typing and putting myself through pain, that I could quite easily be avoided. Taking my booster, was my preferred option because, a) I’m not going to let some stupid arm, stop me from doing what I do, and b) I’m not going to let some stupid mood, stop me from doing what I do, oh, and c) I’m not going to let some stupid illness, stop me from doing what I do. That’s me, pig-headed about what I do, and who, or what has the right to stop me. Some of you might see that as being hard on myself, but I don’t. I know totally that I push myself, don’t let myself take any setback lying down or even slow me down, but there is a good reason behind all of that. I have made the mistake of letting things get to me in the past and it has never had a happy ending. I learned from my life that if you give in, you might as well give up. It has been the rule that I have lived by all the way through this whole situation. Yes, I do know the difference between, resting, or taking time out and giving up, but I am not going to take that chance.

The worse my health gets, the more I can see just how easy it could be to close my PC down, wheel myself through to the bedroom and climb into bed, for a while, or even forever. I see that as a fast track to death. Almost as bad would be to settle myself on the settee and waste my life away watching TV. Personally, I think far too many people out there who are too willing to just stop. Even worse than that, are the people who turn night into day, give up that connection to the world and let themselves stay up all night and land up sleeping all day. I don’t care what anyone says, if you have the strength to get yourself from one room to another, to sit and watch TV all day long, you have the strength for some sort of activity. It doesn’t matter what you do, but we all need that structure to our lives where we have daily goals to achieve. We have all known someone who has become unemployed and the slowly vanish. They change as time goes on and they haven’t managed to find another job. The more time that passes, the more they vanish, until they are ghosts of their former selves. It is no different with chronic illness. I push myself because I want to live. I set goals, have to do lists and fill every minute of my day because I am not ready to give up on life. It doesn’t matter how ill I feel, how much pain I am in, or how hard it is to get up, if I can do it, I can do everything else, so I do.

To me, chronic illness isn’t an excuse to disconnect from the world. The world may not give a stuff about me, but I still care about it. Mindset is everything. When my son, Jeffery died, I sat on the settee and I disconnected from the world. I sat there for several days and felt as though there wasn’t a single reason to do anything. I don’t remember doing anything, even eating. Then suddenly one day, it was as though I woke up, I realised that I couldn’t sit there forever, I had to live. I went through almost the same process when I was diagnosed with PRMS, but this time, I didn’t slowly rejoin the world, I gave myself one almighty kick up the backside because no one had died. I was still alive, all that had changed was that someone had hung a new title around my neck, chronically ill, but I wasn’t dead. Unlike Jeffery, I had a life and to be alive meant I had to live. I had to do all the things I always did, for as long as I could, otherwise, what was the point. So yes, I am hard on myself, I hard on myself because I have been given a life and life is hard. I don’t understand why I should just give up, why I should do what is expected by the very same society, that doesn’t give a damn about me. Chronic illness isn’t death, it’s life.

If anyone out there expects me to just say, “my arms hurt too much today to complete my post”, well you’re going to be waiting a long time. If anyone expects me to say, “I’m too tired to do this”, or “I’m not well enough to do that”, again you’ll be waiting, because I don’t intend anytime soon, to be letting go of the life that I have, no matter how painful, or how difficult it gets. Life is for living and life is tough on all of us.

Please read my blog from 2 years ago today – 16/10/2013 – To tired to actually care

I seem to be avoiding today, avoiding it in every way I can. I’m not even sure why I am trying to avoid all the things that I know have to be done, including the shopping which arrived an hour ago. Apart from the freezer goods….

Finding peace with pain

There was something I wrote the other day that twigged something in the back of me head. Oddly, well not really that odd for my brain, I don’t remember what it was or when I wrote it, I just know that I did. The back of my mind is often the safest place for information to lurk, as there it isn’t being interrupted or written over by the activity of daily life. I have often found that this happens, it is almost as though I write something and a light goes on, then it grabs the subject with a smile and the knowledge that it will be the subject for me to write about in the near future. I guess the oddest thing is, I am not aware of doing it at the time, but I always know it’s been logged and I always know that I will use it within a couple of weeks. I nearly did the other day then I found myself locked into something else and it dropped back into the pending file, occasionally being added to and padded out just a little. The subject of my lurking friend this time was pain and how I see and feel about it now. I had written something about the grade of pain I was in and how these days that level was what I saw and accepted as “normal”. Pain, any pain, isn’t normal nor is it something that any of us actually truly needs to be in, so how does someone thinking change to the point where living on Morphine and still in pain and somehow find that to be “normal”?

Clearly there is a large factor of getting used to things, but even that doesn’t feel right and in many respects, that in itself is wrong. No one should be allowed to get to that point where it’s just part of our lives and to believe that’s the way it is. It actually makes me a little angry not just with the medical profession, but with myself. By the time they actually got around to finding the correct diagnosis, I knew that normal painkillers just didn’t work for me at all. I was beyond the point where an aspirin was going to make me feel better. Twenty years of living with pain had taught me already that relaxation was the only thing in my armoury that helped. It didn’t get rid of it, but it made it easier to bear and allowed me to handle it and life. So when I received my diagnosis, instead of doing what I should have, demand that they did something about the pain I was in, I continued to deal with it myself. Yes, they gave me drugs that they hoped would modify my condition and over the first 3 years we worked through the spectrum available. They did nothing, something I was later told was pretty much expected as it is one of the problems with PRMS, it doesn’t react like any other form of MS to meds. All they could do was to treat me for my symptoms and that was the first time that my pain was actually tackled. We worked our way through a range of painkillers, but whatever they gave me, the effects were limited. Even now, when I am living on a high background level of Morphine, I frequently have to take another high dose to deal with the breakthrough. The pain I live with still isn’t truly under control. So there is the history, but those are the facts, not the answer to my question. “How did I get to seeing this as normal?”

The answer to that is actually quite complex, but I actually think there will be a large number of people who will relate to it. When you are fighting everyone and I do mean everyone, friends, families and doctors, to get them to believe and not dismiss the fact you know you are ill, your whole way of looking at life changes. Without meaning to, you set up several different mindsets that you switch between. The first is that they are right, there is nothing wrong with you and it is all in your head. If it’s in your head, well you just have to fight it, to change that perception and to get on with life. Surprise, surprise, that doesn’t work. The second, forms because you don’t want to piss off those around you. When they don’t believe you are ill, constantly showing or saying there is something wrong, get’s reactions of annoyance, disbelief and even direct anger. You learn to hide everything. You put on a performance that keeps their anger at bay, which in itself makes your life not only easier but less painful. The third, well I’ve mentioned this one before. You convince yourself that if there is nothing wrong with you, then the rest of the world must be feeling exactly as you do. Everyone must live with the exact same level of pain as you do, therefore you are just a total wimp and you have to toughen up and get on with it. The fourth is probably the most obvious, that you have to be totally mad and the only thing that you can do is shut up before you find yourself locked up somewhere. The final one is the one that got my diagnosis on it’s umpteenth attempt. I am ill and I have had enough of been called a liar, they are going to listen to me. I am sure there are probably others, but these are the strongest ones that I am aware of and they are the three that I switched around within for years.

All of them, except the final, have one thing in common, you are putting on an act, an act that you have been involved in for so long, that showing reality is almost impossible. Even now, I hide, I can’t help it. Even when I am on my own, I will feel a shot of pain that would have many screeching and doubling up. I remain almost silent and hardly moving at all. I have become conditioned to my illness and what is often seen as my being strong, is actually just me hiding again. I am so locked into it that I am sure that I have made my life harder as even doctors don’t always believe me when I tell them how bad it is. I know that happens, it has happened a lot despite my diagnosis. Being stoic is a double-edged sword, usually with both edges facing straight at you all of the time. Unusually though, there are times when being stoic actually does help with the pain. It is such a phycological game that I am playing that the game itself gives me strength, and that strength, allows me to be still and silent, to breath through the pain, rather than go to war with it.

20 years of playing games, of pretending and acting my way through a world that at the time not even I believed was real, has put me into an odd position. I have learned to bear pain, pain that has and is without a doubt getting worse in line with the progress of my PRMS. It appears that my bodies reaction to my munching myelin monster is to cause pain for every new munch. To be able to see pain as “normal” is actually an advantage to me, if I didn’t, I would be screaming and crying all the time. I believe, that I have to be able to call it “normal”, otherwise madness would be my next stop. For some reason, we seem to be programmed with a need for normality. I think we need to be mentally comfortable with our lives, otherwise we are living an abnormal life and where is the comfort in that. I guess that is why “normal” is a personal thing, but I would go further and say that “normal” is a desirable thing and without it, we are living in turmoil. I have become calm, accepting and totally at home with my pain. That doesn’t mean that I like it in any way, it just means that I am at peace with the life that I live and it shows. It has also played out to be an unexpected ace card. I am now in the position that when I tell my GP that my pain is beyond what I can deal with and that I want my background level of Morphine raised, he doesn’t argue, as he knows that it is really needed if I am actually asking.

I have heard it said that you can get used to anything. I suppose that my life is sort of the proof of that statement, but I think it is a statement that only touches the surface. We all have a mixed relationship with our health, but it’s our health and when you can’t cure it or change it, you have only one other choice left, to accept and embrace it. I guess that is one thing that isn’t a game or an act, it’s my reality.

Please read my blog from 2 years ago – 04/09/2013 – New life

Almost every time I think this is it, I have done everything needed and I can just go back to enjoying my PC, it points out something else that still needs to be rebuilt. The new drive was installed with ease as where window 7 and the Alienware Software, all of that was done yesterday afternoon and I spent right through until 9pm updating both……

The pain fantasy

It happened again last night, I was sat there enjoying the TV and my nightly gin and tonic, then suddenly the pain grabbed my side just as it did the night before and just like then it lasted only a few minutes and it was gone. I had had some smaller spasms during the day but they weren’t anything like the evenings, they were smaller like most of my spasms but they ended and my day moved on. It’s strange how quick you become used to pain, to just letting it happen and pass by, then continuing with life as though nothing has happened. In some ways that is how it feels, as though nothing has happened. If I stopped doing everything and became all cut up and tearful at each pain, ever spasm or any nerve that wants to pass on a message I’d rather not have, well I would spend my entire day not just feeling sorry for myself, but working on all the tricks I have learned over the years. Life would be impossible, I would be doing little of anything and the result would undoubtedly be depression. I don’t know when I learned to put pain to one side, to go with it when it is there and then to let go and get on with the rest of my day. I know it was many years ago, probably back to when my daughter was a baby, your life is so dominated by having a baby that you don’t have time to be anything other than being mum, especially when your husband isn’t around due to work. I had no medication other than paracetamol, which I had to buy as the doctor wasn’t convinced it was anything but my adjusting to being a mum. I had very little money in those days, and at times found me trying to live off Teressa’s child benefit, which meant no money for anything other than her food. I had no choice but to learn to get on with it, to have a baby in one arm and another hand gripping or massaging where ever the pain was, it taught me to just get on with it and cope, just as I had to with the rest of my life. The longer you live with something the easier it get to deal with it, that doesn’t mean the pain is any less, in fact it is worse, but having learned you don’t forget and you apply it in the same way with the same systems of coping, I just don’t have a screaming baby on my shoulder to distract me any longer.

Age brings a lot of disadvantages but it also brings experience and that is what makes the difference to everything. If I was sat now beside an 20 year old who had exactly the same pain that I have, I know without doubt, I would be the one who would hardly show it, other than closing my eyes and controlling my breathing. I don’t think you can train someone to cope, you can give them the tips of what works for you, but each of us has to find what works for us and that takes trial and error. When the pain hit me last night, I closed my eyes for a few minutes and I breathed slowly letting the worst of the pain pass and wash over me, not fighting it, not trying to remove it, just letting it happen. I know the drugs hold the worst of the pain from me and I just have to let it flow, until I can reach a point where I can once again get on with life. The pain won’t have gone, it isn’t as easy as that, but once the level is liveable then that is what I do, I just get on and live. I don’t know if it works for others but I find staying totally still, not moving at all, lets the pain pass quicker. I used to fight it, to do anything I could think of to try and ease it but it never worked, in fact I think it may actually have often made it worse. Spasms usually peak and last five or ten minutes at it’s strongest point, once that passes then is the point to work on it and free it up.

There are so many different pains, spasms are just the ones you find written about all over the place and I have just supplied another, but having a combination of illnesses means I have a combination of pains and all of them has been a personal learning curve. Years ago I thought I would eventually be given a medication that would take it all away and that then my life would become normal, I guess all of us dream of that happening, but it is a dream. Medication will help to control and to reduce, the rest is up to you. Life for me is never pain free, I actually can’t remember now ever being pain free, but I am sure it once was. If I stop for a second, removing all distraction, I can’t find a pain free area at all, there is always at the very least a dull ache the covers all of me. Then there are the painful areas, smaller areas, that burn, have pins and needles, muscles that twitch and nerves that spark, nothing is silent or peaceful. Then of course in the last six months my diaphragm has increased in it’s own personal vendetta to make my life hell, now never silent, never pain free and never just working totally as it should. Each and every one of those pains has it’s own relief patterns but most, well most of them I now just live with, it takes too much energy to work on them all.

The strangest thing that someone who doesn’t have any illness will find to understand, is that you just live with it, you don’t spend your life doubled up in tears or demanding medical attention, you just live. Most are now just the back ground sound to my life, there all the time but like lift music, you tune it out and get on with it. If you want to live then that is what you do, you live, you ignore what can be ignored and pick up on what makes life good, something I have written a lot about. How we all survive our own lives is down to how we decide to deal with all it’s problems, not just illness and I have loads of them, but I don’t moan, I don’t ask for anything that I don’t 100% need and I find different ways to make my days good. No one can make pain go away, not me, not doctors, no ones, accept that and you are 50% on the way to being able to get your life back, regardless what is happening to your body. The other 50% is down to you, you have to work and learn how to be happy the way you are, strangely happiness really is the biggest healer I have found, it gets you through a lot.

Setup to talking

I don’t usually reread my posts until a decent amount of time has passed, I do this as I don’t want a fresh reading to cause me to write the next post to heavily under their influence. But because of the depth of felling in so many of the comments here and on twitter, I have found myself having to reread as I can’t actually remember the detail which has been picked up on. As Adam as left the house this morning he referred to something that I had written yesterday, I didn’t know what he was talking about as I simply don’t remember the details or if I am honest often the major subject points. Frequently by the time I am on twitter setting out my plugs for the day, I have to refer back so that I can actually plug it. I found myself racking through my mind as to what he was referring to and as is inevitable I got it wrong, even if I had it right talking about something as he leaves the house isn’t really helpful. He seems to have a habit of doing this and I can only assume it is because he wants to acknowledge what I have written but he doesn’t really want to talk about it. Throwing out his opinion just before the front door closes, stops any chance of us sitting down and really talking things through. Looking back he has always done this, I can only guess that he doesn’t want to have what would be possibly be a painful conversation, running out of the door removes that possibility. To some extent I think we all do it, we want to show we understand and that we are aware, but we don’t want to go into those details, conscience clear, we run before the possibility of conflict or pain is possible.

As I have already said we haven’t really sat yet and talked this through, but I am so bad when it comes to face to face talking these days. My memory has become a living breathing minefield, no matter how I try those craters appear and I fall in lost and with no way out. Writing allows that thought, the read back and the time to say what I want to, well in regards to what makes sense to me. This is such a huge subject that what I want to do is for both of us to sit down and talk at the weekend, Adam having read them all and me having reread them all, that way I think we will be able to talk frankly and Adam will have full understanding of how I feel, where he isn’t sure, I can then fill it in with more detail. I don’t what this to be like a class room exercise, where we refer back to paragraphs and sentences, I want it to be a genuine discussion and this is the only way that I can possibly make myself understood without leaving huge muddled gaps. The more important and the more complex the subjects the harder and more likely it is for everyone that things can be misunderstood. But add in a memory that has redesigned itself into a honeycomb with a difference, some of the holes are filled with chocolate mud that won’t let go if you try to walk through, or spaces that grow as you approach them and what is left is nightmare. I challenge two people with the sharpest minds to have this very discussion without being misunderstand, getting tied up in detail which don’t come into it, without their emotions running away with them and generally turning it into an argument, which just wouldn’t help anything. What chance do I have in just getting everything across neatly and concisely, without causing a bigger problem than we already have.

Four days on from where this all started and already I feel more settled about what is happening, I have lost that feeling that I am screaming inside in disbelief. I remember sitting in the doctor office and feeling totally at ease with what he was telling us, I thought I would be sat there with the tears flowing and in total horror of his words, simply because that is how you see it on TV and in the movies. I was amazingly composed about it all, I know that I had worked much of it out before I went there, but I was 99% sure I had MS before the Dx and I cried like a baby when they told me that. Maybe already having a killer disease meant that the Dx of another didn’t really matter, all that changed was I now had a prognosis for one of them. I haven’t actually cried for myself at all, the first and only tears came when I read Teressa’s comment on Wednesday and then I was crying more for her compassion and understanding than I was about the news I had had. That to me is always the bit about illness that is hardest to deal with, not what it is doing to me but what it is doing to those around me. I can deal with this, I know I can, I have dealt with it so far and I don’t really see why I can’t deal with the remainder that is still to come. To be honest I don’t care half as much about how it is going to be for me, as I care about how it is going to be for them. I guess that is the down side of loving someone, none of us want to see those we love in pain. I don’t want to see it in them and they don’t want to see it in me.

The physical discomfort and pain are still increasing, all the things that I felt only when in bed last week, now appear during my day when sitting or walking. As I said yesterday I can only guess that now having movement means I now can feel what was happening before, but it was shielded from me. The feeling that areas of my lungs are turning to stone, come and go constantly shifting from one spot to another, these solid spots expand as I breath in and tighten as I breath out. The sharp stabbing areas that feel like the blade is being twisted seem to be turning up in new areas. Until now they were locked in the area around the bottom of my ribcage, over the last few days they have been traveling upwards. Sitting though is the worst step up, all the discomfort zones are now pain zones and new area’s are now uncomfortable, I am just hoping that as my body get used to the exercises that it will settle down. I have to say at this second if I could turn the clock back I would have found an amazingly good excuse not to have physio. It is almost as though the Dx was like giving my lungs full permission to do what ever they could think of and they took it.

Even with the pain increases I still feel at ease, I have this horrid feeling that it is all going to explode at any moment. How can I be sitting here just doing what I always do? I’m sleeping, eating, smoking, writing and watching TV, life hasn’t changed at all, yet on so many other levels it has changed so much, it’s hard to get my mind around.