When the past returns to stay

Receiving comments is one of the joys of blogging, especially for someone like me, who doesn’t spend that much time, remembering my recent past. I don’t know why, but I often spend hours in my distant past, my childhood and possibly the next 15 years, as they were traumatic times in my life, a time when so much of my life was wrapped in pain. Once I had broken free, and truly built a new life, well life became what I believe it is for most of us, just life. It’s not that it’s boring, or none eventful, or doesn’t hold great happiness and love, but as far as memories go, the majority of it is everyday, normal and average. Even my diagnosis of PRMS, in my mind, doesn’t rate as highly as my distant life, it was devastating and painful mentally, but in reality, nothing changed, I was still me. There is a huge difference between what happens to us internally, and what is done to us externally. So finding myself having to think about what happened in the years that followed that diagnosis, was actually difficult, as I was trying to find memories, that I thought weren’t really there, beyond as that of shadows.

My PRMS was diagnosed because it was in full flow, I was changing, becoming more and more disabled almost by the second. In just three years, I went from a competent fast think person to needing someone in the office with me all the time. I can’t fully remember now who paid for them, it wasn’t the company I worked for, no they were for the first time trying to write me off. I was so sure that I was about to be forced out, that I turned for help to the community nurses, they put me in contact with this body who supplied helpers for those who were in employment. I can’t even remember her name any longer, just that she was this elderly lady who was retired, and like me had worked with high-level maths and arithmetic. Although everything I did was done on the PC, using programmes that I had built, I had developed firstly no memory for getting everything done and secondly, I simply couldn’t see when the reports I was issuing, were wrong. I couldn’t see, when the numbers were actually complete rubbish. She didn’t do my job for me, but she double checked all my finished work, before it was distributed. This was well before I even had my wheelchair, so I was quickly exhausted, and couldn’t cope with the size of the office I worked in. So she also did all the running about I once did. Back then, I honestly thought that life was nearly over, I was useless and being employed, was a joke, but I didn’t want to give up.

What made me remember this period was down to one series of events. She was so sure, that she could find a way of organising me, with lists and so on, that she one day appeared with diaries, wall charts and so on. I have to say that I was highly insulted that she thought that I hadn’t already tried all these things. I opened my desk draw and pulled out my own collection, a far more comprehensive and far bigger collection. I had a filo-fax, dismissed because that was just what I did to it, ignored it, just as I did ToDo lists, wall charts and my old-fashioned desk diary. An electronic personal organiser, with alarms set to remind me of dozens of things, which partially worked on days where everything went smoothly, but if it didn’t, well I answered it peeping, then forgot what it was peeping about because I was too busy to. The same problem occurred when I set up alarms on my PC, they would flash up and be dismissed and forgotten. I had post-its galore, once attached to the edge of my PC screen, which were even more dismissable than any of the rest. A dictaphone, because I could no longer write fast enough when in a meeting, to be sure I knew what I had to do after it, then would forget I’d made a recording, and so it went on. You name it, I had tried it. There was nothing at all, other than a human being stand there telling me what was next, that worked. Despite all of this, we tried. We tried for two weeks and then she even admitted my mind just wasn’t holding on to that sort of information. She had no doubt that I could do my job, technically I could run circles around her and everyone else there, but I had to be prompted. But as you know, I wasn’t forced out then, or for a long time after.

The answer came in two parts. Firstly a wheelchair, so I was so fatigued, but the big thing was the chemo, which I have spoken about often. It was not long after my third dose, I no longer needed a human helper, I was back to me. It was a total miracle for me, over the three years of treatment, my health went into reverse. I had more energy, but I still wasn’t perfect, but my wheelchair assisted and I recovered, I returned to being the switched on can do anything person and I had my life back.Unfortunately, you can only have this treatment once, although I would happily take the risk, I can’t have it again.

So here we are, 9 years on since my last chemo dose. Once the treatment was over, progression returned, but just as my neuro had said, it was slower, less aggressive, but it did return. Each year, I have edged downwards, not just physically, but mentally. Just as before, I can still do what I need to, no I couldn’t write a software programme or produce amazing spreadsheets that show not just what is needed, but with a single cell change, showed what might be needed as well. Physically, everything is exhausting, I can’t cope with taking a shower every day, it’s all too much and assistance, isn’t, going to change that. Every day, I stay busy, so I don’t remember unless told, to shower in two days time, or three, because on day two, I couldn’t manage. A single unexpected phone call, or someone ringing the doorbell, is enough to throw me into a spin. But with Adam telling, pushing and coaxing, I get there. Nothing is simple for me now, change is a monster I can’t deal with, strangers are even worse. My routine isn’t written down, or if it is, I don’t know where. All I have is a spreadsheet, one that I built years ago, that keeps me in line with twitter and writing this, but if something doesn’t happen daily, it won’t happen at all. I couldn’t manage to do something every second day, that just doesn’t work at all, we’ve tried it.

If it were just my body that was the problem, then life wouldn’t be a problem at all. My mind is now a law unto itself. Some days, it is fast, some days, it does everything without a problem, but others, I’m not even sure where it is, I go into auto-drive, if it didn’t, I would do nothing. So what do we do? We can’t afford to pay anyone to help me. We can’t afford to even have a much-needed home help, there just isn’t the money. Besides the money, I don’t think I could cope with someone fussing about me. I sit here all day, normally, I move just four, maybe five times, once for lunch and the rest to fetch juice and go to the loo. I don’t need anyone to do those things, as long as they’re laid out for me to do. All I need is a brain to step in when mine fails and to me, that’s a waste of person’s life, just sitting here in silence for nothing.

 

Please read my blog from 2 years ago today – 14/02/2014 – Stair way

I don’t know why I didn’t think about it before, but of course although there are some who have read my blog throughout, most won’t have and that means many don’t fully understand some of the most…..

Not unique just deceived

They say the MS is unique to every sufferer, but from very early on in my writings I have had people continually saying to me that I am writing their story, that it felt as though I was describing the things they couldn’t put in to words, not just for MS but for many other conditions. I think that is the biggest thing I have learned, I am not as alone as I once thought I was. Spend your life amongst people who are able bodied and fit, it is very easy to start feeling as though you are some kind of freak or that no one can ever understand because we have this unique illness, designed by our bodies, for our bodies. If I could get doctors and writers to do one thing I would ask them to stop telling new sufferers that they can’t tell them what will happen as no two people are the same, and therefore tell us nothing at all. I knew they couldn’t give me a calendar with milestones for each symptoms on the date they would happen, but I wanted something, some idea even if it wasn’t totally clear as to what I and they could expect in time. There is now one fact that is clear to me, my illness isn’t unique, bespoke, yes, but not unique. I may not feel something in an identical way to the next, but we do have the same symptom, how we experience it is down to us. I could make the same comment in regard to the common cold, but my headache won’t be identical to yours, as pain is bespoke to the person, but no one ever says that a cold is a unique condition.

If you head home from seeing a doctor with this impression that you are some how on your own, it makes adjusting so much harder. I was 10yrs plus from diagnosis before I started to write and I found more and more people who are identically unique to me. An MS hug is still an MS hug, regardless if you feel it as low as your pelvis or as high as your neck, it still exists, I didn’t know that when I had my first one, I thought I was dieing as no one told me this Hug thing even existed. No one told me a limb could die and come back, or of any symptom that I didn’t have at the point of diagnosis, I was under the oh so wrong impression that I had the full array of symptoms that I would ever have, and all that would happen was they would get worse.

So I want to say it right here and right now, no illness is unique, there is someone out there who is going through exactly what you are right now, and here is the other strange bit, many of them won’t even have the same condition as you. I often wonder if it might not be more helpful to a patient if they were yes told what condition they have, but for true support and understanding that throwing that label away is probably the best thing you can do. If you have brain fog, it doesn’t matter if it is caused by MS, Fibor or Parkinson’s, we all have brain fog and we all get the same symptoms with slight twists, but the same. Every symptom I have, I have found someone else with, some had the label or Lupus other Lymes and many with conditions I had never heard of before, but we were all going through the same thing. Chronic illness regardless of which flavour you are talking about, throws up the same problems, the same fears and all to often the same symptoms, may be it is the umbrella of chronic illness, that we should all gather and there supply the support and knowledge that our doctors are all to reluctant to discuss. Many who know me from twitter will know that I have already moved away from saying I have MS as much as I used to, well now you know the reason. If all those support groups and charities out there now set up to help each title were to pool their knowledge and resources, I can’t help think that they too would be able to do so much more. All of us pulling together on all the things that we share and we have individually found solutions or assistance, seem to me to make far more sense, than us all saying continually, we are unique, no one understands. Well we do understand more than many might like to think.

Doing the Knowledge

There are always loads of things to think about in life and I have been told often that I “think too much”, a phrase I have never really been able to understand. To me if you don’t question everything then you don’t have a chance of understanding anything. I am inclined to believe that “knowledge is king”, it’s OK I’m not trying to put in as many quotes as I can into one paragraph, they are just apt to my post today. When I first had the idea put to me that I had MS I wanted to find out as much as I could about what I was facing, at that point I didn’t have a confirmed diagnosis, just an opinion of a doctor who didn’t specialise in neurology but ENT. What I did was what many do I started to read everything that I came across, I read and read and scarred myself to death and also laid down in my mind a lot of rubbish, of things that may never happen or have and aren’t as bad as the medical description made them out to be. At that point I thought I was arming myself for the future, that I had to know what was possible to happen to me as time passed, I wasn’t.

One of the things that I would love to change about the whole medical system in the UK is how and what they tell you when. I do believe strongly that they should tell you everything they know and not hold back anything at any time, but they miss terribly the opportunity to help us all learn and understand what is wrong with us. Some of you may think this isn’t a Doctor job and I am not suggesting that it is, what I am suggesting is that knowledge packs should exist for all chronic conditions, it is that pack that should be handed to you at the point of diagnosis. I and many I have spoken to have all come away with questions that once out of the hospital the only place we have for information is the internet and as we all know that isn’t the place for a novice to find reassurance.

The first thing that I would want to see in such a pack is firstly a FAQ, I will almost guarantee that every doctor could put together a list and those list will be not unexpectedly reasonably identical. I know in the last few months on twitter that I get asked again and again the same things and I try to answer but I am a patient not a Doctor, I can only ever answer with how it affects me. I do know that a lot of conditions are individual to the patient but there always are huge crossover or even universal symptoms that could be explained.

The second a glossary of terms used and what they mean. I have on a few occasions translated doctor speak incorrectly and it is their language that is confusing ,not what they are saying, plain English isn’t used by the NHS and it often feels as though they are talking in a foreign language on purpose so you don’t know what they are really doing.

The third would be a list of web addresses and literature, that have been checked for their presentation of information and passed as suitable to read. I have trawled through medical papers and research notes trying to find what I am looking for and not been able to understand most of them, wasting hours for a simple question.

The fourth a list of organisations and charities along with contact details that specialise in assistance for that particular condition, with a few details of how they can help. I am not big on these but I know a lot of people find them helpful.

The final one is actually the one I hear most tagged with “no one told me” is a list of what benefits and support that are available if you fit the criteria and how to claim them. There should also be info on what might be available in the future such as carers, respite and so on, all these things I know change from area to area, and the criteria change from time to time, but if you don’t know it even exists you can’t even try. I spent 2 years paying out over £300 a month for taxis, there was I eventually discovered a payment I could claim that paid the difference between what my travel expenses would have been use a bus to travel to work and what the taxi cost was, it worked out that I only had to pay about 1/3, the rest was picked up by the EU. I know I was surprised to the EU doing something useful.

I would have given my right arm to have had such an information pack. It was months after diagnosis that I was given a couple of one page leaflets that told me nothing that I hadn’t already found out, but it had taken a lot of work and upset to get it. I really believe that armed with this information it would make adjusting to your condition a lot easier. Not everyone I know wants to read anything other than a one page list of contacts, but the more you know and the more you learn about thing, the better you are armed for the future. When a new symptom that you didn’t even know could happen in your condition appears, it is frightening, if you already knew it might happen, then the fear is lessened and being calmer, you deal better with the situation you find yourself in. In a round about way as well the pack would save the NHS money as a lot of visits to the Doctors are not needed all that is needed is to know it is normal to your condition, or that it is something to get seen about asap.

Not everything can be covered for every person but surely it is better than people around the country stressed out trying to find the info they need when someone already knows, and they just haven’t told you.