The lump on the back of my head seems to have at last almost gone, there is just the slightest rise still there and I need to press quite firmly before I feel any tenderness in the area. I don’t believe I am any closer as to knowing exactly what caused it, but the only possibility is my sleep mask. I know that sounds odd, but when I put it on last night the elasticated band that is adjusted via a strip of velcro at the back, happened to land exactly on it, it did the same the night before but I dismissed it, but the length of the lump matches the length of the velcro. I have never heard of someone sleeping on something that then causes their head to develop a sizable lump, but as there is no other possible explanation that either Adam or I have actually managed to come up with, well, it seems the only answer. I know I jokingly describe myself as a delicate tropical flower that needs careful handling, but this is really going too far, mind you, it’s even more proof that nothing makes me move an inch once I am asleep, not even a growing painful lump.

The last few days have been what I would call odd, I just haven’t felt right and almost every time I stand up, I have felt as though I was going to collapse. Not so much due to the sensation in my head such as dizziness or vertigo, but more the feeling that my limbs just aren’t going to carry me. I have had this many times in the past but never for this length of time, it is usually something that will happen a couple of times in a row then vanishes, this is now day four. When it has happened in the past it has usually been in the late evening so I have always just put it down to the lack of remaining energy and the final sign that I should really be in my bed. When it happened on Wednesday morning I honestly thought that if I took a single step away from the desk, well I wasn’t going to take a second one. When you are on your own and something like this happens it is hard to know what to do for the best. I could have just sat down again, played it on the safe side but then I would have been stuck here with no way of getting a coke or going to the loo and without Adam to help me, well I would be marooned. There really isn’t any choice in situations like that, I just have to take a chance and hope it pays off. If I was sitting telling Adam this, I know without a doubt what he would say, that I should have phoned him and he would have come home to take care of me, but that then makes thing difficult when it comes to his job. Working for the NHS you would hope they would be understanding, especially as he hasn’t had to take time off to care for me other than taking me to hospital for appointments, but you just don’t know, I prefer to play it safe. I was proved right, I could take a step and another and another, but I was almost at the kitchen door before I was able to actually feel secure with movement. Making yourself walk when you really don’t believe your body is capable of it, is so much harder than you would ever think. It isn’t the physical issues that play hardest in your mind, not the sensation or reasons as to why your legs say the can’t do what they should, but the fear that you will injure yourself severely if your body does fail you. Fear is such a hard thing to overcome, but if you don’t, well chronic illness will turn you into a bedbound invalid.

In the last year the occasions where I haven’t been sure what to do for the best, have increased, mind you I suppose it is all relevant, I am clearly not as fit as I was a year ago so the times I feel so wrong I can’t do what I want to, would rise, yet to me they seem to have increased disproportionately. I know there is a huge difference between “feeling as” and actually “can’t”, but the results can actually become the same thing and it is something I know I have personally been fighting ever since I was diagnosed. As I said yesterday, I fought my walking stick, my wheelchair and anything else that if I had used half a brain cell would clearly make life easier, but I feared if I gave in, I would never walk unaided again. I know the day will arrive when “can’t” is both a feeling and a fact, but until then it’s telling the two apart and knowing which is the truth at that second that is the challenge. Fear says sit down and try later, fact says if you don’t try, you never achieve anything. Fear says if you crash to the ground you may well be badly hurt, badly enough you will land up in the hospital, fact says if you don’t try at all, you will probably land up there anyway and so it goes on. Who would have thought that just getting a glass of coke, would become a debating issue without clear answers on either side? And all the time you are standing there with this feeling of all your energy and strength slowly sapping out of your body, down through your legs into the ground and your muscles getting weaker and weaker.

Even sitting here at this minute, just as I have done in the last few days after sitting for more than an hour, I have this sensation in my legs as though they are flat and useless. There is this gap, that appears between my hips and knees, then my knees and my toes, where there is this nothing feeling gel that has no true structure, useless in just about every way. It is the same sensation as I get at night or even when I go for my nap and I loose the true position of where my limbs are. I can locate with ease the main starting joint, but I honestly don’t know if my hands are clenched or still lain flat, or if my feet are touching each other or even crossed, they are lost, as is most of the rest of the limb, still there, but where? Trying to stand on that is all about trust, the trust that says they have been there all my life and they are still there and will carry me, regardless what they seem to think. Which leaves me with the real question, what is it they are really trying to tell me?

Please read my blog from 2 years ago today – 10/01/13 – 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…….