Still here

I can say already that this is going to be a day of discomfort, pain, and tiredness. It’s less than three hours since I got up, but already my backside is sore as though I have been sat here all night rather than sleeping, trust me I was asleep. In fact, I think I slept well, I don’t remember waking at any point or of even having one of those dreams where you know you are more awake than asleep, as the dream is more a commentary on something that has happened at some point in your past. I hate those dreams as they inevitably mean that you will continue to think about them once you are awake, just going round and round in your head, blocking you from really getting on with the day. It doesn’t matter how well I think I slept, I am already exhausted and wishing I could just go to sleep right now, but I also know that if I did go and lie down, well I would rest, but I wouldn’t sleep just now, once again because of that brain that know what it should be doing and won’t let you do anything in its place, especially sleep.

I know that our brains are amazing and that they are what make us who we are, but if there is one part of me that has taken a beating over the years, it is that very brain. I often wonder just how much I have changed thanks to what my MS has done and exactly what sort of person I would be if I had never developed this immune system that loves to try and destroy me. It’s hard to analyse yourself as we all want to be the best we can be, so lying to ourselves is normal, we all do it daily when we look in a mirror, somehow only ever seeing what we want to, or eat something we shouldn’t, pretending that somehow it’s OK as only we know, so that cream bun won’t make any difference to our weight. Some things can’t be lied about or ignored and when the damage is so clear that not only you, but others see it, well those changes have to be rather large, with no way of ignoring them.

I used to be a very patient person, someone who was happy to spend time with others teaching them how to do things, or helping them as part of a team, I can’t put a day on when it changed, I just know that it did. I found myself being pulled up by people about the way I had just spoken to them, the tones in my voice were totally not intended and even when told about it, I often still couldn’t understand what I had done wrong. It hard to admit that I had gone from someone who worked well with people and who relied on my personality to earn my living, to someone who was better kept away from them as I was bound to sooner or latter come across as mildly aggressive. When parts of your brain are being eaten away, you don’t feel any different from the person you have always been, you don’t notice it happening and you don’t understand when others pull you up for it. I was being told that I wasn’t me any longer and that is really hard to get to grips with. It isn’t as easy as working on it and taking care that it doesn’t happen, that is a little like you being told that as of today you must never say the word “yes” ever again, how long do you think you would hold to it before you made a mistake? The only way I could work on it was to not speak to anyone I didn’t have to, to avoid even joking, as that was to often a pitfall I collapsed into, I had no choice, but to change from being a sociable person to a loner.

It wasn’t the only reason I stayed clear of people, I had one other problem that to me was even worse, I cried all the time. The simplest thing could set me off, especially if I had to talk about anything personal, or I felt for some reason I was required to explain myself over anything, from the personal right through to the work I produced. The greatest trigger was when I knew I was right about something and I couldn’t explain clearly, mainly because of the tears, just what I was trying to say. I remember clearly just a few years ago when we had a new bathroom fitted, I sat here in floods of tears as I was trying to make the builder hold to exactly what I was paying them to do, blubbering all over the place isn’t a good look or a good way of getting people to listen to you as a serious adult. Brain damage is a serious thing that most people don’t understand, even when you take time and explain to them what is happening and why you are crying or speaking the way you are, they remember for a minute and then just see what is wrong again having forgetting why.

As an employee, I also found a further problem, it was used several times by one of the company directors as a way of trying to force me out of my job, I was lucky as I had one strong voice on my side, but even they occasionally only heard the director’s voice. Not once had I ever tried to cover up my health, I was as open at work about it as I am here in my blog, everyone knew and I was honest if I thought my work was being affected by my MS. On one occasion I was even sent to see an occupational therapist, which I found extremely amusing once I had been there. It was clear to me and the therapist that I had been sent there in the hope that the results would say I wasn’t capable of continuing to work. One of the things sighted was that I had shouted on the phone at an outside contractor, I had told them from the very first time it was mentioned that I wasn’t meaning to shout, but I couldn’t hear them over a bad mobile connection and I apologised for the usual human reaction of assuming if I can’t hear, neither could they. The therapist found me totally fit for work and even said if I needed them in the future should it go to a tribunal, they would be on my side, not just because of what I said, but because of the letter they had been sent, it was clear this director had it in for me and they were using my illness against me. Being honest about your health may not always be a wise move, but as it turned out the director in question left the company a month later and my problems at work ended as they left, I remained with the company for another 4 years.

Brain damage isn’t easy for anyone, but if I were to give anyone advice, it would too be honest and too do what I clearly failed to do with at least one, to teach people about why and how it affects them in detail. There will always be people who will hold it against you, see you as flawed and therefore not fit to be part of anything, but there are also those who will understand and who will support you. Once started like many things there is only one direction, brains don’t heal and memories that are lost won’t come back, but living life where everything is calm, were your days avoids stress and change is held to the minimum, have once more made me a calm and patient person. I know my limitations and so does Adam, between us life for me is good, but I also know that I could never once again cope with the outside world. It isn’t a place I can ever be part of again as the damage is now at a point where people, change, minor and major irritations, stress and the expectations of others, are all things that I just can’t deal with anymore. Brain damage doesn’t show on the outside, it only shows to those people who knew you before it started eating away at the true you, people who remember and can still see the person who was once there, as I am still here, just with a rather large number of problems when it comes to managing what other call life.


Please read my blog from 2 years ago today 03/06/12 – Peaceful contentment

The more I speak to other who are also housebound or have a chronic illness the more I have found that we all eventually find a point where we are contented with life and cope with everything that comes our way. It is as though our lives become peaceful. I have been trying to work out where this peace comes from and why we didn’t have it before becoming ill. I can think of no point in me life before my MS forced me into my home for good, that I was continually at ease and……

4 thoughts on “Still here

  1. Thank you for the last few posts, well all of them really, but the last 2 or 3 days ones have again really resonated with me. Though I don’t have MS (as far as I know, though nothing would surprise me!) My brain and cognitive skills, memory, concentration have gradually being getting so bad, it’s so much more of a struggle to get through the days. I deal with all the paperwork, bills, finance etc/. and it’s all in my name, but that and trying to go to my activist groups, the Doctor, chemist, food shopping, are getting more and more difficult. Even today while on a bus for about 25 minutes, the talking and chatter of all the pensioners on a very small bus (all close together)was really making my head hurt and I, like you have always loved being around people and been very good at it.

    I have had another distressing letter from ATOS about my complaint about being expected to travel from Norwich to Ipswich. They haven’t “looked into the issues properly” and all they’ve done is reiterate the DWP policy of it being fine to expect me to travel 90 minutes for the Assessment! The thing is, it wouldn’t be just 90 minutes, that is the round trip by train from Norwich train station, that doesn’t take into account, getting from my home to the train station by taxi, the same at Ipswich end, arriving 10-15 minutes before appt. time, waiting in waiting room, then a 40-60 minute interrogation. My Doctor has explained why he won’t write to them at this stage and really why should he, they have all my detailed health information? It has been suggested that I should see another Doctor in the practice, to see if they would write, change surgery, but again why should I? I can’t take all the hassle of that and I’m settled at that surgery and like my Doctor, his policy is he’ll help if I get turned down after the Assessment(very likely)and support me in the appeal process. My MP has all the info regarding this, have had to sign a form allowing him permission to look into it all. My only other option is to get a friend, who has offered as she’s retired, to drive me to Ipswich, and take another person, if required. I would pay for her petrol costs.

    On top of all this, a very serious and dangerous, complicated situation has arisen with my son and family, I know I’ve spoken about how difficult he is, but trying to support him in this. My disabled daughter-in-law took 5 year old Granddaughter away from home, without any of her stuff, to another part of the country, last week on Tuesday, to a known convicted paedophile, among other things and he is barred from having contact with under 16 kids, though has 15 year old daughter and 20 year old son with him. She came back Thursday after her Mum texted her, I only found out then and have barely been able to sleep since then, feel sick at thought of what’s happening. Thankfully, 9 year old Grandson has been in Sweden on a chorister school trip and only got back last night. The Mother and this man &his contacts are very clever and manipulating, they have previous history (last time Grandson was involved and he bears the mental scars of that)The Social Services etc., in the other area weren’t very good at the weekend, though Norfolk were and they have the previous history. In fact I was getting so upset and angry at how almost everything is now set up in this country to help and protect the low-life, evil people, it’s all about their rights etc., what about protecting the kids no matter what? Anyway, all her family, parents, sister, myself all phoned ourselves and added our concern, experience etc., my son is very clever, got a lawyers+ head and if anyone can do things in the right/best designed way, he can and is very good at it.

    At least he has now realised some of what I said about Government not helping people anymore, hindering and worse, is true as previously he could have got some legal aid for this, now he can’t. Yet, the low life daughter-in-law (this is who she really is and always has been, everyone else has been trying to “make her middle class”)and the abuser, evil man will get legal aid and goodness knows what other help and the court have to follow procedure and serve her papers to say she can’t have the kids living with her!!!!

    Anyway, right now I have my Grandson safe from school, he will stay here tonight we think, His Dad and Grandad have driven about 4 hours from here to collect Granddaughter as been told he can. This could be tricky as she doesn’t really want Grandson, he’s too old, independent, clever and not so pliable and she lost him 7 years ago really when she did her awful deed to him. But she won’t want to give up the girl without a fight. Of course, she’ll play the girl in a wheelchair thing, very manipulative and deceitful, but if she can’t do much, am sure the man will have plenty of low life friends, hope police etc., turn up. I’m not to tell Grandson anything yet, so that’s all very odd, the Judge will look at residency order tomorrow as my son went there yesterday with his Mum-in-Law to insist on a Judge looking at the case urgently.

    So every time I thin k I’m coasting along kind of ok, in Fibro/Arthritis etc world, with the ATOS etc., hanging over me, but then along comes something worse! Even friends etc., say we seem to have so much bad luck&never really get a break&it’s harder to bear.

    It helps a bit to offload as it were to someone outside of it, tahnks for being there.


  2. Pingback: Being people friendly | Two Rooms Plus Utilities

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