Words to live with

It’s been a tough week, I’ve spent all of it locked in a battle, which, although I don’t intend it to get the better of me, it is wearing me down. Those who know me well enough will have spotted, that something was up. I too have noted that I have been clearly picking subjects, that said little about the now, this very minute. It’s not that I am trying to deny that it’s happening, it’s just I know how tiresome it gets when someone goes on and on, about the same single thing, especially when it doesn’t really change. That’s what makes it such a battle, it doesn’t matter what I do, I am in constant pain from my stomach. See, I told you, it boring. So I’m not going to go on about it today either, it’s more an update, a note to say that it’s now three weeks, since I last had a straight six hours, without the level of pain, that makes me reach out for the Morphine. Nor, have I had a single day, where sleep hasn’t been on my mind, far more than I remember before, two things that I am now convinced are locked together. Tomorrow is the start of week four, I just hope that if I need to make an update, it will be to say, that at last, it’s settling down again.

I’m starting to truly hate that word “chronic”. It seems to have snuck its way into every corner of my life, almost everything seems to be “chronic”. The only good thing, the things that 14 years ago at diagnosis, were then counted as “chronic”, mainly don’t bother me at all now. I’m not saying they are gone, they just don’t bother me. That’s why I say that it’s a sneaky word. What it does, is attach itself to something, then it starts looking for the next step above. It’s not even bothered if it’s the same symptom or something totally different, it see’s it, and it want’s it and just like most petulant children, what it want’s, it normally gets. Each step it takes, well it forgets about the one before, because it’s got a new toy, that’s bigger, brighter and more painful or annoying than the last. I’m never been sure which is worse, pain or annoying. In some ways, I’d actually say annoying is wins that match. Painful, well it can be treated with meds, relaxation and sleep. Annoying, just eats away at you, hour, after hour, after annoying hour. Right now, on the annoying scale, the winner has to be my legs. They died a couple of weeks ago now. Well, I think it’s a couple of weeks, that’s the problem with annoying, they appear and become part of our lives. Days, weeks, or even months pass without count, they just are, before you know it, it becomes part of your life. As I said, I am sure that those things that were “chronic” 14 years ago are still there. It’s just, that they are so much part of me, that I no longer know they are there, or that they are wrong.

We have all heard the classic story of the person who on visiting their doctors, forget to mention, this or that. Well, that isn’t just bad memory. It’s because what some might see as wrong and needing to be fixed, are just so much part of us, that when the doctor asks “How have things been?”, we say “Fine”. It’s not habit or forgetfulness, it’s because this horror story called our lives, is “fine” and “normal”, to us, it is us. If forced, I don’t think there is a single inch of my body, that I couldn’t find something bad to say about, but to me, it “normal”. We aren’t as dotty and as daft, as some think us, we just have a totally different way now of measuring our world. Think about it, how many seconds after putting on your make up, or a hat does it take for you to forget that it’s even there? Well, it’s the same thing, just on a bigger more permanent scale. I have heard so many people tell me that they will never get used to this or that, ask them even just a few days later and there is this moments where you can see in their eyes, that they are having to think. They have become used to it, it has seamlessly slotted itself into their lives.
Not being able to feel anything other than numbness in the majority of my legs, is a normal everyday thing. “Annoying”, but “normal”. Most of the time, unless I am drawn to it for some reason, like it being so intense that it if feels like it has frozen its way right through to my bone, I almost forget about it. It hasn’t gone anywhere, it’s just in a quieter spell, or I am deeply distracted enough for it not to dominate.

It has been such a long time now since I felt what most would call “normal” that I honestly, don’t think I can even remember it. I don’t actually think, I can even imagine it any longer. My body, is just my body, and the things that it does to drive me up the wall, are not exactly expected, as I honestly don’t know what it will do next, but I do know it will do something. Every movement I make has some sort of price attached. Messages from my nervous system are so screwed up and so sensitive, that anything, even just a single breath, isn’t just about air, it is about, what every nerve involved, thinks it feels. A breath doesn’t start and end with the pain from my diaphragm, or intercostal muscles. There are thousands of nerves in that process, from the ones the air travels over in my nose, throat and trachea, to those on my skin that should, just feel material on skin, but often finds sandpaper, fire, ice, and numbness right next door to each other or at the same time. My nerves have been turned up to 11 for so long, that I couldn’t even tell you what 10 feels like, all I know is I often wish I could feel nothing, oddly, though, that something I equally fear.

I doubt in reality that there is anything that my body can do, that it hasn’t already done. Those things I often say are new, aren’t really, they’re just a variation on the theme, but that what “chronic” health is, a variation on good health. Admittedly, it’s a rather unpleasant variation, but it’s one you get used to, no matter how unpleasant it gets. We all learn to live with whatever life throws at us, which is very different from liking it, but we live with it, what other choice do we have. In many ways, I suppose not being able to remember “normal” is a blessing and the reason that the longer we are ill, the less we bother to tell people that this or that is causing us a problem. We’re fine, because what else is there? To annoy everyone by being honest, to make ourselves depressed by dwelling on what can’t be changed? I don’t remember taking the decision that I was “fine”, but I do remember that I decided that I had to accept this odd life as “my normal”, as otherwise, I was simply going to make my health worse. I doubt if there had been a film of my life made as it happened and if you sat and viewed it, that many would reach this point in my life and find anything “normal” about any of it. To stay sain, I had to see it as “my normal”, so it only makes sense that I see my health in just the same way.

Please read my blog from 2 years ago today – 12/12/2013 – Awareness

The last few afternoons I have been dealing with a common problem with a twist, “Google madness!”. You know when you set out to do something incredibly easy on-line to only find out it is a total nightmare! It isn’t what…..



Now or Later

The start of another day, and it all seemed just all to normal. I have said repeatedly that I hate that word as it normally refers to what is average for the population as a whole, but when it comes to my health at any given point in time, there is no other word to use. Today is normal, not your normal, I will agree but that is the problem, we all to easily adjust to our situation and take it from there. It really is a problem that I didn’t think much about until recently, if we didn’t adjust with such ease, would we maybe fight just that bit harder to maintain our full health. I am not saying that it is mine or anyone else fault that they have through illness landed up where they are today, but I just can’t help wondering that if I had put in just that bit more effort into walking when things were getting difficult would I have managed to walk for just that bit longer. Questions that I know there is no way of answering.

Being able to adjust is physiologically clearly a great thing, otherwise I would be totally engulfed in depression and I probably wouldn’t be writing this now. I don’t think that I exactly gave in at any point and just accepted what my body was doing, but I did give into the nagging from the medical profession and accepted my wheelchair. I know they were just trying to offer the help my body needed but it will always be that niggle in the back of my mind. I suppose that I have good reason to feel that way, as I had no diagnosis for nearly 20yrs and through out that time I managed on my own. I know they worked out what was wrong because my illness changed from relapse remission to progressive, but it also opened the door to being allowed to be ill, before that I just had to keep going no sick leave, no feeling sorry for myself, just pushing on through life. I am grateful for all the help I have had, but I think you can see what I am saying, knowing what is wrong makes you feel sane, but it makes room for so many other things as well.

I’m no doctor or a physiologist but living through so many changes and so many peaks and troughs of health, forces me to try and understand why or how I accept or react to what is happening. I have found that I react amazingly well to the major thing, but get easily frustrated and even at times distressed by the smaller things. I know that sounds like the wrong way round but that me I guess. The morning I woke up to find my left arm no longer worked I managed to get dressed and to go to work, I don’t remember even the slightest tear or anything other than a matter of fact attitude, and being annoyed as I burnt a tuft of hair off with my hair dryer, that distressed me more than loosing the use of an arm did. Back to front, no distress when I have knocked myself out, gouged cuts in my arms or any of the major things. I suppose they are all things that are out of my control so why get upset about it, it won’t help me or anyone else either. Maybe that is why I cope better than some others, when things go wrong I put my energy into how to work round it and with it, rather than what I can’t do any longer. I focus on life being as normal as possible and that is the normal I don’t like, but I use it as a gauge, it allows me to try and bring my life as much as possible in line with the rest of the world. I know they will never be equal again, and forcing myself now is to late, the damage is done, I just have to live to the fullest that I am now capable of and remember to be happy that I can do it at all, as one day, well I won’t be. How I cope when that happens well I guess we will see.

What is OK

So here we go again a day of left leg pain, not the horror of last week but daily pain with a note of extra intensity. I have had a need in the past few days to write on a fixed topic and haven’t really updated how I am, the reason is simple, it hasn’t really changed. Silence for some people means that it has to have got better, it doesn’t for me and I am totally sure as well that it isn’t for the majority out there with a chronic illness. You can’t talk continually about how you feel, as it is in itself something that gets boring not just for me but I am sure for Adam as well. Being asked how I am on most days will get the stock reply that we all us, “I’m fine” or “I’m OK”, it actually means I am as OK as I can be. It would be incredibly hard to daily answer that question with a list of what has been driving me mad that day. I know from a life of being in pain, that if you don’t talk about it for a while, the assumption is that you are better. I have in my head a line of shocked faces from when I informed them of the reality, that I am never fine or OK, and that the pain I mentioned six months ago, or a year ago, is still there. There is a fine line between informing and whinging, none of us want to be seen as a complainer or a wimp, often a difficult line to walk. The problem starts when you find yourself leaving the consultants office at the hospital and you realise that once again you have said “I’m OK” while silently expecting him to read between the lines and pick up all those things that you have forgotten about, in the year since you last saw them.

I haven’t actually seen my consultant for about 5 years, Adam managed to get me there not long after I became housebound by not being able to use my wheelchair. At that point I could get up and down the stairs, as long as I went slowly, but once I couldn’t get out the appointments ended. It feels as though somehow they have washed their hands of me, because I am now a difficult patient to include on their list. Something I am not actually bothered about as the Neuro’s have never done anything helpful for me other than to sort out my pain meds, which I and my GP have fine tuned, I really can’t see any point in going back, especially if the pain clinic that I finally will see next month can improve things, the Neuro role in my illness is gone.

I had hoped that by now my sleep patterns would be back to normal, it’s now well into my second month of sleeping from 9pm on every day. There just doesn’t seem to be anyway of staying up past that point, and I have to say in the past few of days I have felt the tiredness settling in much earlier, then fighting to get to nine o’clock. I really don’t want to give up any earlier and although I don’t normally fight things, I am fighting this. The strange thing is that it seems to make no difference how much sleep I have in the day. I occasionally only have one hour instead of my normal two, and I have tried sleeping for three hours, but the night sleep still arrives when it is ready. Once it arrives, it has control and I never lie in bed for more than a handful of minutes without being deeply asleep. I am still considering letting my body sleep as it want over a 48hr period, just to see what happens, it is only the kick back from the change in routine that worries me, is it really worth it just for an experiment? I’m not sure.

Wheels for the brain

I am still finding staying awake a little on the hard side just now, last night just like the last few I was in bed before 9:30 and still asleep when the alarm went off, add in my 2hrs in the afternoon and well my awake time is becoming very limited to say the least. When awake I feel drained and given the freedom that I don’t allow myself to simply climb back into bed, that is were I would be right now. I know a lot of people really don’t understand why I won’t give in and just go to bed if that is what my body needs, I have spoke before about the routine that is needed but it is also something else and that is maintaining normality. I really don’t want to turn my world up side down and sleep odd hours, I have a need to stay in line with the way my life has been for the majority of my life. The only time I changed it was due to work, when I was a DJ I worked mainly between 7pm and 3am, so I had to switch it but as soon as I gave up that life style I set my alarm for morning and that is were it has stayed. I have a need to still have some discipline in my life, to have set times to do things and for those time to be what I would call normal. I might have it totally wrong but I really think if I let my illness dictate how much time and when that time is to be awake, I would be finding everything harder and harder.

I suspect part of the reason I fight to stay awake is that I am very aware there will be a point when I won’t have the strength to actually fight it, and at that point I will have to give in. I think that I may push myself to do a lot of things for that reason, simply the awareness that one day the choice will be gone and there is a huge desire not to give into it before that time comes. I suspect there is also a large amount of wanting something to be NORMAL, I really hate that world but there is often no other that I can replace it with, yes I want things to be normal.

I have been very much forced over the last couple of weeks to admit that I am past the tip point, I think in many ways it has been harder to admit that than it was to admit I had hit the point where I needed a wheelchair. I had struggled for several years to get around on my own two legs and a walking stick. Where I worked was a standard call center, a long room that I couldn’t walk form one end to the other without having to stop and rest, if when I finished work I couldn’t get a taxi, I was stranded trying to stand until one became available, and I had turned myself in to almost housebound as I couldn’t entertain the idea of going any where due to pain and exhaustion. It is hard to admit you have to give up your legs for wheels but I can assure anyone that is facing that right now that they should stop fighting and just take it. It really changed my life, it was the most wonderful thing I had been given for years.

Admitting that you are now mentally not up to surviving everyday life is much harder, there is no gadget that can help me like my chair did, this is harder because the world can’t give me something to make up for what I have lost. Unlike being unable to walk when I just stop because my legs have had enough, I can’t stop my brain rest it and start again, it just doesn’t work that way. I can see already that as I have tried all the normal memory prompts and gizmo’s and I have gone past being helped by them, I am on my own in many ways. I thought about having someone coming into the house to help me with somethings but don’t need physical help I need a brain that works, someone being here would aggravate me as I wouldn’t feel able to do what I do when I want to. I would find having to talk a trial and I would fret about my home not being perfectly correct and tidy all the time. So I am stuck! As I said I am over the tipping point but still holding on with my fingernails to prevent a fast slide downwards. Without doubt this is the hardest thing I have come up against and it is going to take time, a lot of time to know how I get round or past this. How this will unfold only time will tell.

Normal abnormals

Shopping day again, it seems to come round so quickly although it is once a fortnight not weekly. I am just waiting to hear the van outside and the noise of sliding doors, followed by clanging sounds as the green plastic boxes hit the pavement. I always hear it long before the door bell rings ,and to an extent I even know which delivery guy is outside by the noises I hear, it strange how we learn these things, like when waiting for a friend to arrive we jump at the sound of a car, just in case it is them, but we know when they do arrive as we recognise the engine sound of their car, and the others, well we jump to them, as we don’t trust ourselves to get it right. I don’t remember being quite so good at it when I was mobile but it does seem to be a skill that has grown, the less able to look out the window the more my recognition has improved. They say that when you loose one sense another takes over, it may be my mobility that has gone, but my hearing and brain have worked together to form an alternative.

With the shopping due this morning I also know that Adam will be home for lunch today. Weather permitting, he will come home for a brief visit most days, but on shopping day he has taken to coming home regardless. The delivery men are great and they put into the kitchen the items that I have to put away there and then, the items for the fridge and freezer, but the rest is placed on the hallway floor, from there I pick up bits and pieces that I can lift and slowly put it away, taking some rest every few items. There are of course things that I can’t lift and move, I used to always just leave them on the floor in the hall and Adam would put them away in the evening, then suddenly for no reason I can think of, Adam suddenly decided that they were a danger to me. He thinks that with them there I might fall over them, it is something that worries him a lot, I know that. If for instance he is hoovering and leaves the hoover somewhere to do something else, he warns me it is there, in case I might some how not see an upright Dyson hoover and fall over it? So today all the heavy items, that I agree I might forget about, but would always see, have to be moved by him not for my safety but his peace of mind. It is really sweet of him and I know it is done out of love, but it makes me laugh as I hate to think what is going on in his head to see it as logical. I do wish that I could put his mind at rest over many small things, but I have tried and failed so many times that it is easier really to let him do what ever it is he feels he has to.

To date not one of the falls I have ever taken have been due to me tripping over or walking into anything. If I am to fall it is always for one of two reasons, either I have simply lost my balance, most likely when I am turning a corner or just as I am standing up, especially if I have been daft enough to kneel on the floor, my balance doesn’t seem to want to deal with the different shifting angles involved in the standing or bending process. The second reason is slightly more complex, I have vaso-vagal which means that my heartbeat can drop suddenly causing my blood pressure to drop and then I pass out. Some actions like holding my hands above my head, to say shut the curtains, but normally for no reason at all the nerve will be stimulated and over I go. The Doctor who diagnosed the vaso-vagal said it was most likely that my MS has damaged the nerve but it is something that also happens without any outside reason. What ever the cause the fact is I don’t fall over things, I just fall over as simple as that. It is one of the reasons that I stay close to walls and furniture as I have developed an art of more sliding down things, rather than simply hitting the floor, it saves me from knocking myself out which has happened in the past.

Falling is part of my life and it is strangely another of those things you learn to live with and find a way round i.e. my sliding down rather than falling. We all adjust and absorb these things into the new normal, but they remain a source of worry to those around us, it is hard to remember that at times. I doubt that Adam will ever see it as normal and I suppose that is one of the things I love about him, illness is an odd collection of abnormal normals.