Why would I want to?

I hate days that start with “I’m waiting”, but that’s exactly how yesterday started, waiting for the doctor to call. Actually, if I am being honest, it wasn’t quite the start of the day. At the start of the day, I found myself in excruciating pain. It was terrible, but I knew that for once, it was a productive pain as within half an hour of getting up, I was heading to the loo as fast as I could. Unlike last week, firstly I wasn’t having to resort to a suppository and secondly, I managed to pass a really good amount. Somewhere in my stupid little head, I found a logic, a logic that said that maybe, that was what had been, behind the worst of the pain. It was the same logic, that stopped me picking up the phone earlier, despite the fact I had had 3 hours of pain, before getting out of bed. Yes, I know that reading that makes no sense what so ever, but you have to remember one thing. I am the owner of a human brain, as such, I will try to kid myself, over and over every few seconds, for as long as it takes, that’s the problem with being human, we’re basically stupid. So now I am waiting, again.

The longer that you are ill, the more that it appears, we become stupid. Personally, I think it’s because we quite simply have had enough to deal, with when it comes to our everyday health. When something else comes along, well, the stupid factor comes into play. For me, the stupid factor is easy to find and even easier to name, the hospital, or rather, having to go to the hospital. There isn’t one aspect of that situation, that isn’t problematic, for me. Yes, I know that sounds stupid, but it’s just the way it is. From the very moment, my GP says to me, that he is referring me to this clinic or that one, it starts. All these barriers start to appear, barriers that cause me stress and it just grows and grows. The first in line is asking Adam to take more time off his work, to accompany me there. It doesn’t matter that he is entitled to take time off to go with me, he stresses, quite rightly, about taking too much time off. So much so, that it isn’t unusual for him to actually either take it as a holiday or without asking or being told, he will make the time up. It doesn’t matter what the law says, or the fact that he himself works for the NHS, he worries about the whole thing. As an ex-manager, I fully understand his worries. I have in the past myself had to manage staff taking time off for such things, and despite the law is technically on their side, they can still be given official warnings about their attendance. The idea that I might be the reason, he might be put in that position, is only my first hurdle, but it’s a big one. Yet, I have to have him with me, as the very idea of heading out on my own terrifies me.

The stress of having to deal with all those people, starts long before the Ambulance arrives, it starts the second, I know it’s going to happen. Take me out of my comfort zone, and I can’t cope. I quickly start to feel agitated. The outside world is a daunting place to be when, your are forced, to sit in a wheelchair that you have no control over. That tiny element, of being out of control of where I am going, is hard to deal with alone. Add in that people want to talk to me, and I have to answer them, freaks me out. I can talk without stress to people I know. To my family, my doctor and so on, but strangers don’t always allow for my stuttering, my inability to find words and you never know which sort you will meet, that knowledge alone, makes it even harder. I get more and more agitated the longer I am away from the house, as I know it’s only a matter of time before I have to speak to someone.

Just getting ready to go, is one of the things that has always told me, that even if we lived in a ground floor flat, I still wouldn’t be able to go out. Every day, I sort of dress. Pyjamas and a dressing gown, getting dressed to go out is a totally different ball game. By the time I have worked my way through the whole process of clothes, make-up and hair, all before 8 am, I quite simply want to go back to my bed. Even when on my last appointment, I trimmed it all down, I didn’t feel any better. Being dressed, making myself look that touch more human than normal is enough, to exhaust me, so no, I don’t have the energy for the rest of the day, before it even arrives. Even without the stress of going to the hospital, I know without a doubt, if we lived in a ground floor flat, I would still never leave the house.

The Ambulance service do their best, but they too are part of the problem. All appointments are made for the morning, so you have a window from 8 am on, that they will pick you up. Often, they actually arrive, later than your appointment was made for. Granted, you are always seen, but for me to be late by even a second, I find unacceptable and always have. My arriving half an hour late for an appointment is mortifying. Then there is the stair-climber. The contraption from hell, that bumps you around like an out of control fairground ride. I defy anyone, not to feel sick after one flight of stairs, never mind six. I hate it with a passion, but it is the only way out of and back into my home. Occasionally, the ambulance doesn’t have one. Then you’re held up even more, as they have to call a second crew, so they have the safety standard of four people to carry me. I already have the experience of them not being able to find one ambulance to take me home at all, we have then had to sit waiting. Not just for an hour or so, but hours, the latest I have been brought home, was just after 7 pm. The stress wrapped up in all of that, is enormous, and I haven’t even mentioned the actual appointment.

Any appointment with a consultant is because something is wrong. You don’t just pop by for a chat, there is always a reason, even if it’s a return visit. The core of stress is always going to be there, and you don’t have the slightest idea, if you’re leaving with more trips for tests and so on, or immediately with a new condition and new medications, or waiting for an operation. One way or another, something will be there at the end of that day, even if you leave with no conclusion, you’re leaving with the problem you entered with, and that believe me, that, can be far worse. Whatever the conclusion, you leave that room still faced with the process of going home, followed by the process of trying to return to normal, something that doesn’t happen quickly. This is probably the biggest thing that says to me, no matter where we lived, I still wouldn’t be able to go out. That single day, even if it runs totally smoothly, which occasionally it does, it will still take me days to recover. Going out, just isn’t worth it. Going out to the hospital, is unavoidable, and often lands up feeling like some kind of punishment for being ill.

While I was writing, the phone rang. I am waiting, as I expected, my GP is sending once again, back to the hospital, so I’m waiting, for yet another appointment. My GP is putting me onto some stronger antispasmodics, to take on the days when things are bad, to see if they make any difference. So now, I’m waiting for one prescription and three appointments. Two later this month, and another, well who know when I just have to wait and see, when it arrives. Waiting seems to be another symptom of chronic illness, as at times, it’s all we ever seem to do.

 

Please read my blog from 2 years ago today – 01/03/2014 – On my own two feet

I remember watching an interview with some celebrity, forgive me but well names aren’t exactly my strong point, not just now but forever, her sister had been ill for years and no one had the slightest idea what was wrong with her, despite endless tests. As her health had deteriorated she had expressed an interest in going to India and an opportunity arose for them both to go there. The celeb was there……

 

 

 

 

 

What is Surviving

I wish I could start a post without the first thought being that my synopsis of how I feel is yet again starting with tired, I am sure you all get really fed up hearing it as well. It is though just the way things are I’m tired and my legs hurt and I simply want to go back to my bed. There it is said so let’s move on.

I seem to be a little short tempered today, something that I usually control reasonably well, but you wouldn’t believe how much I want to throw something at Adam, once again he is snoring on the sofa, and snoring at such a level that I can’t hear half of what is being said on the TV. I am sure that it isn’t good for him and the occasional long silences aren’t good for me either. It is a mad world where on one hand I want to sellotape his mouth shut and put a clothes peg on his nose to half a second later wanting to poke him to see if he is still alive. He has always snored but like the hairiness of his back it has increased with his age, the back thing I like, the noise thing I don’t, men are really odd creatures.

This morning I came across someone on twitter who is having a tough time with their illness at the moment and I think miss understood what I meant when I said that to be a Survive was easy. All to often we know what we are writing but others don’t see it in the same way, they clearly felt that because their meds weren’t having the desired effect, that they were failing with them. Surviving and coping have nothing to do with what the medical world can do for us, I see them as being states of mind, if you can stop each day and look at your life to see the good feeling out weight those moments of wanting to walk of the edge of the world you are coping you are a survive.

Expectations really do change the way we look at our life, I have no expectations of ever feeling well again, or ever being pain free again, those things will not happen, and nothing any doctor can give me, can make that happy. I have long since written it off as impossible. I doubt I will ever have another pain free day, or a day when I can manage to do the what were once simple things. The one thing that MS has done for me that is totally positive, is I have changed how I feel about life and how I measure those things. I used to believe that if I didn’t not only present my work to a higher than required standard but that I did the same with my home and myself. One hair out of place was totally unacceptable, I was failing. A mad way to judge anything, but at the time I didn’t see it that way. I had to keep up with everyone and out perform them, even when my illness was clearly taking more and more out of me. What made me reevaluate I can’t tell you, but I did, I stopped wiped everything of the board and started again. A good day now means that I receive love and I give love, as simple as that. There are no measurements of it, no sliding scale where failure enters into the possibilities, with that removed you can’t help but to have a good life and to live as a survivor as nothing can bring you down, or make you fail.

As you know I have my days of frustrations, of pain that blinds me a little, days when I have had enough, but they are days, not my lifetime. My life time started again six or seven years ago, as when you reach that crunch point where your life has more to do with your illness than what was once important, you have to start the clock again, as there is no comparison between old and new, and you have to let go of the old. From that point on the majority of it has greatly outnumbers by miles the difficult days, simply because of love. The love I have for Adam and Teressa and the love they give me, to say I need nothing else would be mad, but above the basics of life, as that is all I need, I have everything. I can see how many don’t get it when I say I am happy, as what have I got to be happy about, I see it the other way round, what have I not to be happy about.