Setting out memories

I woke today for the third time in a couple of weeks with pain in my left foot, especially in three of my toes. I tried again to see if I could find the reason for the pain but I can’t see anything. At least today is Friday so I will ask Adam to take a look for me over the weekend, I am guessing it is nothing more than a couple of toenails requiring attention, but well with the lose of feeling coming and going all the time, it is best to have it checked just in case it turns into something more serious.

Today is a day with a difference, my friend Jake who although I see little of but speak to weekly is actually coming here later. He is looking to change his way of life and get a job that will supply him with a steady income rather than his commission based wages at the minute and he wants help with his CV. I understand his need to change things but I fear that at the minute he is going to find it really hard, with so many out there with experience applying for every job, someone who has never worked in that field isn’t going to get a look in. With him being in his 40’s, I think it is going to be even harder. I have only been out of the business world for just over a year, but I feel so disconnected from it now that I can’t be sure that any advice I can give him will be what companies are really looking for, the business world changes quickly and constantly. I will of course do my best for him and I really hope that he is successful as I would truly like to see him settled into a career that might take him through to retirement age.

Until he asked for my help I hadn’t really thought that much about how fast I had lost contact with what is now my past life. I know I struggled for a while with not having a job and still do in some ways, but what I have proved to myself again just how being able to manage change isn’t just a work requirement of a company manager, but a life requirement of all of us. Mind you I have had a huge amount of experience through out my life of coping with my world being thrown up into the air and then having to pick up the pieces that survive and build around them. I know that it is impossible for the NHS to supply everyone who has a chronic illness with a course on how to manage the news and what is ahead of them, but I see now just how many could really do with help at that point, giving them the foundations for what is ahead.

Early in my blog I wrote about how in the past 10 years I spent money and time building my home in to my sanctuary, how I bought things I found beautiful so that where ever I am sat I see beauty, not empty space as so many modern homes seem to favor. Now I am so glad that I did just that. More and more my memory trail round my home is coming into it’s own, being able to look from item to item and from collection to collection, just remembering, is a great comfort, especially strangely on my foggy days. There may be a fog stopping me from remembering 10 minutes ago, so looking at things that pull me in to memories of years ago, somehow makes me feel better. So the second reason for it’s existence also works, the things I see prompt wonderful connections to the past. I know that many people have memory boxes, but a memory box to me is of limited use, you have to make an effort to sit down with your box and go through it, being around you all the time it constantly keeps things fresh in my mind. Fashion these days is towards homes that are more about ease of cleaning rather than spaces to commemorate our lives and our loves. But I can’t recommend highly enough to anyone who is slowly slipping in the memory department to fill that easy to dust in a swipe space, with what you as a person love. Once locked in doors even partially if not totally, those memories grow in their importance, and beautiful things always make you smile and bring simple enjoyment time and time again.

The ‘beautiful things’ is actually one of the reasons I wish I still had a wage coming in, I still see them from time to time for sale and there is no money to buy. I guess that is why I stay away now from sites like Ebay, they just remind me of what I can’t have, an extra negative that none of us need. I suppose that is another change and one I hadn’t really noticed me doing, I don’t sit looking at websites filled with what I want, when I know I can’t have. Some might say that daydreaming is a good thing, well it is, but daydreaming about something that ultimately will never be possible, is depressing. I don’t understand why people healthy or not put themselves through it, learning to be happy where I am and what I have is essential if I am going to survive with things exactly as they are. It may be for some a tough one, but that is why I say again, while you can buy those things you desire, and do it now, once that front door closes and you are cocooned in your sanctuary, it’s to late to change things then.

Rebuilding the Cocoon?

Friday seems to have taken a lot out of me, it is always the knock on that is more the issue than how I feel at the time. MS seems to let you cope, then kick you repeatably for even having tried to. I suppose it will all take a few days to settle, my routine didn’t exist last week and there were quite simply too many changes to deal with, I know I will get there but these are those hidden moments, the bits that others don’t see. I don’t think my gut liked the treatment at all, I am finding it now rather painful in strange places and clearly not happy with the food I have been putting into it. I can point to the exact positions where my breakfast, dinner and tea are, and I can tell you the pain and nausea is clear, I suppose part of it will be the ruff process of pushing the scope, some bruising and so on I expect, but most is empty space syndrome, gaps of air and crashing food.

I spent all of yesterday feeling half here and half longing to be anywhere else, especially asleep. I did at least get my afternoon nap and one again landed up in bed before 9pm, so yes I have just caught up with “Casualty”, I don’t understand either my love for hospital dramas either, I suspect it is because a lot of the time I actually know what they are talking about and sometimes even manage to diagnose the patient before the Doctors do, that I have to admit is fun, a bit like a who-dun-it. I have always enjoyed working things out and I am sure it is also the reason I can’t stand slapstick humor, what is funny about something you knew before it happened, actually happens, sorry I don’t get that at all.

I can see it is going to take me a while to recover from all of the last week, there are just so many parts to it that my body is still catching up. I know everyone seems to think that I should have a great desire to get out of here, but when my venturing outside causes so much stress, why would I want to go anywhere. I really do wish now that I hadn’t asked for help at all, I would be in a much better position if I hadn’t actually. If I had just got on with it and said OK this is the way my body works now and I have to work it all out myself, maybe just maybe I might have it all under-control with out any stress and without people in my home annoying me, and without yet others forcing me out of it. I managed fine for five and a half years then I asked the NHS to help me and it has been nothing but upsetting from that point on. Isolation was a much happier place believe me, everything just ticked along, day after day and I ticked along with it, I would love to have that back, life has been distressing since I lost it. It is strange how help can land up being anything but.

I suspect that when I do go back to the Gastro. department it will be once they have the results of the biopsies, 4 to 6 weeks time and I expect that guess what they will blame it on my MS, as I did right back at the start in March or April. My gut has simply stopped pushing food through, what I wanted then and would like now is a solution, I just hope they are now out of tests and are happy to just do what I asked and help me make it work well enough to be healthy and to not mess myself daily, I don’t think that I was asking that much really. Before that though I have another appointment this month to go to the Pain Clinic after the mess on Friday I am looking forward to this less and less as my appointment is for 5:45, I know the shifts change at 5 so this might not be a smooth system either. There is a real feeling at this minute of my not wanting to go, I suppose that is understandable and a risk I once again have to take, as I am sure if my pain was under control I would feel better in myself, but I can’t put into words strongly enough that I really don’t want to leave the house again if I can just find a way to pull myself back into my cocoon and lock them all outside it for good. Possibly a silly thing to do I know, but in my heart that is really what I want.

To tell or not to tell?

I haven’t shed a single tear and I have been up now for 4hrs, so I think I am on the right track again, I knew I would get there but well it’s hard to heal yourself when you know there is no true recovery. I am only guessing but I am sure there are thousands of people out there who have or will go through exactly what I have just done. I am sure that my skillfully built cocoon contributed to it, but I still feel that it is probably the best place to be. When you have to live in your home, in just a couple of rooms you have to make it a world that supports and protects you. Without all the safeguards that have kept me going for years now, the perfect little world that I can deal with and doesn’t challenge me hourly is important, but I think I may have done my building just that little too well. I love the idea that I can sit here in my crystal tower, safe from the outside world hurting me and challenging me, but I can also see now that not having people who show you what is wrong and what is getting worse, may well not be the best way to live.

It is partly by design but partly because I have so few people still in my life, who actually come in and make me realise and face up to the fact that things are worse, that I haven’t been just coasting along level for months and years. Although Adam is here he doesn’t see it fully, he is here everyday so the slow slips downwards are just another day not a point to be noted. I also think if he did notice something he probably wouldn’t tell me anyway, thinking he was protecting me from by saying nothing. It is a hard one I suspect for all carers, do you tell someone that their speech is worse or not, is it helpful to do so or harmful, is it going to sound caring or feel like an attack. I guess that it is not easy to know what is for the best, and that it will be a growing issue as time goes on. I actually don’t know the answer to that, I think at the minute I would deal with being told things are worse, but as the damage increases to my brain will I be able to deal with it or react badly in the future. I put so much on Adam already but as time moves on, he will be the only one who can say this is worse, this is better, and he is the one that will be the one who not only tells me, but also the doctors. There isn’t an easy answer, I guess it will be something he will have to judge, can I or can’t I deal with any given situation. For now though I feel more in control, stronger and more able to make a day be a day not a trauma.

I am really glad that I am getting some control back not just because I didn’t want to spend the rest of my life an emotional wreck but I have my next hospital appointment on Friday to see what they are going to do about my Gallstones and what if anything has been found in the rest of the test. When I was there a couple of months ago I never thought that I might have gallstones, to be honest it wasn’t even on my medical radar and the pain and pressure feeling it causes were and are, lower on the list of problems than the terrible gut spasms I keep getting. I have all to often found that I am worried about the things that Doctors see as nothing and they are worried about something you mention in passing. I have waited a long time to get all this sorted out but I really wish now that it wasn’t this week, it seems all too much to deal with, bad timing as life often is. No matter how much I have slept in the past few days I never seem to feel any more rested after it, than I was before, getting up at 6am to be ready for the ambulance to collect after 8am is going to be fun, but it has to be done, after all I have only had this problem with my gut since December last year. 11 months of doctors and nurses tinkering round the edges and getting no where, well I have had enough of it, I need answers now not just ideas of things to try and see if it makes any difference. I just hope that this time we get closer and not be either sent of for more tests or sent home to just get on with it. Before any of that happens I do actually have to pick up the phone and book my transport to and from the hospital, well after all I have only had 2 months in which to do that and it still isn’t done. Time to make a phone call I guess.

Physical Flare

I am waiting for the doorbell to ring as the MS nurse is due here today, with her due in an hour I am having to do the thing I hate most about NHS staff coming to my home, I am having to let the heat out of my house. Because I am a smoker I have to open my windows an hour before they arrive, so this will be the last NHS staff allowed into the house now until next summer, as long as nothing really nasty happens. They don’t leave a cheque behind them to pay for the heating.

I am still tired and still in pain and for once someone will see me not at my worst by any means, but not a my best either. I often seem to have that type of luck that means appointments usually coincide with when I am on the better side, which I have seen as sods law over all the years. I felt not to bad this morning but rapidly slipped as I woke up properly, now two and half hours on, I desperately want to head back to my bed and sleep for several more hours. If offered hibernation today I would accept, it is that type of tiredness, to my very core. I think my questioning is over and I am in flare, not a horrendous one but one that is all over rather than centered as I have found them to be in the past. In the last month or so I have just felt myself slipping and there hasn’t been my normal breaking mechanism that I had years ago. I faced up to that yesterday and started to put myself back together for the millionth time, but I feel so rotten that is going to take time. I really wish that I would learn from all this, but somehow I don’t.

I had hoped to be making great strides with my book but it fell onto a hold spot a few days ago as I just don’t feel up to working on it, all I want to do is coast and sleep, I know there is no point fighting as I only make it worse when I do. There is nothing that I can do but go along with it and wait for the first days of improvement to appear. Even keeping up with this is a draining experience that I landed up scrimping on when it came to my Twitter post yesterday. OK they are all scheduled, but they still take time and energy to actually write and set in place to run, I had also planned to cook dinner last night, as Adam coming home at a set time, would limit my ability to burn anything, and didn’t get there and I doubt that I will either again tonight. There just isn’t any energy to do anything else than sit or sleep, not being able to, or really wanting to fight against and that is where my final flare decision has come from. Flares remove all the fight, they wash away everything that is you and replaces it with an empty void, just like all voids there is nothing but a vague echo of what should be there. Every muscle and bone has a damper attached, resiting the messages to move preferring to remain motionless unless pushed into action. I don’t think that years ago when I was fitter that I could have imagined what I feel now, so to explain it to others takes great care as words aren’t always enough or clear, as words give only a glimpse of the reality.

Imagine being inside a room filled with wet concrete that you have to move through, your body is cocooned by it, supported in it’s position, stopping you from wanting to move, but you have to. Thought and effort allows your arm to reach forward heavy in it’s action as pressure of the concrete makes that simple movement hard, as you move it forward the space you create slowly fills making returning your arm to your side as hard as it was to reach out. The effort of that action drains your core strength so the next action takes more to preform than the first. All the time that you aren’t moving that concrete is setting, action is the only thing that keeps it fluid but those actions drain more and more, replaced with a desire to stay still and accept the cocoon as it becomes more and more comfortable to just stay still, then when you have to move there is less strength and more resistance as the day goes on it increases. I feel as though I could lie in my bed now for hours, not moving, not sleeping, not even existing, but every pain is amplified, every spasm intense and the pressure on my body from mattress or seat becomes needle sharp. The fight between my body and my brain continues all day and my high points are when I can sleep and escape.

I know that all sounds bad, but strangely it has become normal to differing degrees, and I am by no means trying to scare anyone who also has MS as this is just one version, mine and mine alone, there will be others I know who could tell similar stories but none identical. This is how things are when they are bad and when they are good, well the strange thing is you forget so quickly and get on with the good for as long as it lasts. I feel bad for now but I will soon feel good again.