I received a letter from the doctors yesterday, they are sending out the MS Support Worker for their annual visit. I thought a support worker was supposed to be the person you called when or if you need help, it was only when I reached the bottom of the page that I found for the third time in three years, my support worker has changed. I know these things happen, staff change constantly for hundreds of reasons, but another new support worker means yet again I am going to be sat here going over all the history and batty ideas that I have had from the previous ones. I have expressed before several times that it is this sort of thing that makes me turn my back on the so-called help, that is an offer from the NHS, to date their help outside of medication has been anything but helpful. I used to phone the doctors and tell them not to come out and see me, that if I wanted anything I would call, but that caused a wall which meant when I did need help it was harder to get, so once a year every year, I have to go with it. I know what it is that annoys me and that is their insistence they will be able to help when they come through the door, followed by an hour later them leaving having discovered, once again, that I have everything covered. This is also typical, I have 2 weeks to wait for this visit and here I am already getting agitated by it.
I know this is all part of the damage I have in my brain, that the damage done means I can’t deal with anything outside the constant calmness of the life I normally lead. One letter, one change and I am getting uptight. I managed last night to put the whole thing to one side and ignore it as I knew that Adam needed my attention, he had an interview for a position in the hospital that he really wants, but he is convinced that he won’t get. We spent most of the first half of the evening with him saying there was nothing to talk about, but then throwing in something else that happened when he was there. He too has been agitated all week, building himself up for it, as he hasn’t like many people been to an interview for years. Last night he didn’t need me being wound up about something that isn’t going to happen for days. I let myself be absorbed into his needs, then the TV and distracted myself fully until this morning, I think I had only been up minutes when I found my mind was there tied up and winding the rest of me up even further. How do you deal with a brain that can turn nothing into a major event, that reacts to the minutiae as though it is catastrophic?
These are the things that if you aren’t living them, in fact even if you are, that just don’t make sense and finding a way to explain it which is understandable is almost impossible. I am reacting physically as though the world is ending, my muscles are tensed and my mind is racing without barriers and without true direction, just as you would if you had just stepped out of a car after a minor accident. Adrenaline is flying around me looking for the reason it has been called on for, but finding nothing, that just triggers more. I am stuck on a ferris wheel running at double speed and each time I reach the top, there is an uncontrolled drop before it pulls itself back to the top again. I think this is the worst I have been for a very long time, in fact, I think it was the last hospital visit I went to last year, but it wasn’t as bad as this. Now that is either due to one of two things, the damage in my brain has been getting worse, or the fact life has been quite and controlled for a while, that this small thing has triggered what was just waiting to happen. I would like to think it is the second, but I fear it is the first.
Being out of control is something I will never get used to, I was always the one who remained level-headed and found the solutions to things, I didn’t panic, I just got on with whatever was happening and I got through it. To find at the age of 53 I have become someone who can’t open a letter without it sending me nuts, is to me unexplainable. I know the technical reason, that I don’t need to have explained to me again, my brain has become confused with it connections, some are now missing others have built new ones, but kind of got it wrong, it triggers unnecessary reactions to stupid things, I get that. What I can’t get is if I know it is happening, then why can’t I pull myself back into coping with it, as I used to when it first started happening? I am sitting here at this very second with fear running through me, I can write all this, I can be logical about it, but I can’t stop it, it has control over me. Distraction, worked last night, but right now, it is of no use what so ever. Maybe writing about it is making it worse, that is always a possibility, but if I don’t write about it, I am failing in what I set out to do, it has to here for those who might also feel this way and have no understanding, or worse still, feel totally alone as though no one could have possibly been here but them. Trust me being alone in something like this is not nice, I know because I still remember how it felt before I got the diagnosis of what was happening after 2 years of tests.
Doctors telling you why something is the way it is helps to a small degree, but not when that thing is actually going on. Logic doesn’t work when it comes to brains, especially a logic that is as cold as I felt it was when they told me the results. I had to go to see a specialist and go through a range of memory and cognitive tests, the first round of them didn’t even get me a letter to tell me how I had done, I had to wait months until I once again saw my Neurologist, he told me then that the results weren’t too bad but there were signs of some issues and he wanted me to go through the test again, twice, six months apart. I did and I waited for them, the results showed that I have and was still increasing damage to my frontal lobes, which is the explanation for my memory problems, but it is also the reason why I get out of control like this. My ability to control my reactions to things has changed, I am getting less and less able to make clear thought through decisions and I know I have a growing inability to regulate reactions. Both fear and tears happen without any reasons that I can see, but being told all this, rereading it as I just did because I couldn’t remember some details, doesn’t help when you are living it and no one has ever been able to help me get any control back.
If the all the physical sides of MS weren’t enough to stop me from working, I know without a doubt that I would no longer be able to work under pressure around other people, I would be sacked very quickly. In the last 4 or 5 years, I know I have lost my ability to be with strangers because I know it takes nothing to set me off either into crying or to get angry. Adam knows how to handle me, how to keep me calm and how to keep my world constant, I can only hope that continues, but I do fear that the time will come when he can’t. For all of us as we age there is always that fear that our brains will be the part of us that will let us down, I have been living with it slowly happening now for a what feels like a long time and I have found nothing that makes any of it any easier for me, all I can do is to keep documenting it as it all happens.
Please read my blog from 2 years ago today – 20/6/12 – New Problem?
Two Rooms Plus Utilities 
Brains can be a pain! Even with my benign brain tumour depression and paranoia are regular occurrences on top of everything else. Big hugs to you xxxx
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Gosh, you’ve hit the nail on the head yet again Pamela as I seem to experience so much of what you are experiencing, still makes me wonder if it’s more than “just Fibromyalgia”? But it’s like you say with Doctors/medical people, they don’t always know what’s causing all your symptoms, so easy to just blame it on what you currently have. Even if it is “just Fibro”, it has become steadily much worse how it’s affecting me. I find myself as you say, unable to deal with any little or other changes, flying off the handle at it all, my typing on the laptop is much worse as I constantly hit the wrong keys, yet I’ve used a computer for about 14 years? I’m still having hassle and letters from ATOS and DWP about my ESA and having this damned Work Capability Assessment(WCA) they have been insisting I travel to Ipswich as the Norwich office isn’t accessible for disabled people!!!I had one appointment for 7th May, that was cancelled, I complained, wrote letters to them, my MP and it took them ages to confirm they’d cancelled it, that was worrying as I know from knowledge I have, if they hadn’t confirmed, they would easily count me as not turning up and my money would stop suddenly, not at all stressful? I have also been protesting with a local group at that inaccessible office, I agreed to tell my story of being sent to Ipswich with an enclosed map of how to get there by train to local press, so that made them sit up a bit.
After some weeks, I received yet another appointment for 25th June, at exactly the same place, so they took no notice of what had been said. I do have a retired friend who had promised to drive me to Ipswich, then had to try and arrange someone else to come to take notes/support me etc. When I was working in paid jobs and when I cared for my son many years ago, this sort of organising, paperwork would have been easy for me, I was so used to it and very efficient, yet now, it’s really so difficult. I suppose that whereas you are housebound and mostly have your own tranquil world, I’m still “attempting” to be out in the world and am finding it harder and harder&it’s wearing me out.
Then things on the ATOS/DWP thing took a even more bizarre turn, since Tuesday of this week a woman from Ipswich (not ATOS) in the ESA department of DWP has been phoning me to say how sorry they are that I’m having so much bother getting this “Assessment” done and they want to help, so why now? She still says ATOS won’t see me in Norwich, so I either have to have a home Assessment or get ATOS to pay for a taxi to Ipswich and back. I couldn’t get this in May as my GP wouldn’t do the required letter, he said they shouldn’t have to get involved at that stage and they’re sick of all the ATOS thing with so many of their patients. I was really upset as he’s so nice, have a good relationship with him and couldn’t face changing Doctors, despite people telling me, “it’s not that difficult, again one time it wouldn’t have been such a big deal, but now everything is, if I’m honest.
The family situation with my son, daughter-in-law hasn’t got much better, though the children are doing relatively ok. The police were called, this time to son’s house just before midnight to do a “welfare check”, we think it was the kids Mum & boyfriend (the sex offender) that did it as they’re trying to get back at my son, she doesn’t care that she’s hurting her own kids, that’s so shocking for me to deal with. She has also hacked off most of her own family, who have still tried to help her (despite she throws it all in their face)she has left her Father & his partner in Yorkshire, come back to Norfolk, gone to the council here and asked them to house her, telling them she was fleeing from abuse!!! We’ve also found out she stole Francis’ (age 9)tablet computer, that he was looking forward to using after his Swedish choir trip, how low can you stoop? She has an all singing/dancing smartphone of her own, but she’s never had any respect for money, possessions or much else, now it’s much worse. What’s really odd is that my son (ongoing very difficult relationship with)is struggling to cope with it all, though he’s pretty hard and unemotional and he’s now calling me and John many, many times, for re-assurance, advice, whatever. Of course, goes without saying, I am determined to be there for Francis especially as he’s so sensitive, a lot like me, Imogen, aged 5 is a different personality and they have different genetic Dad’s?
I’m off to London on a coach tomorrow to the People’s Assembly big protest/music/other event, not sure if it’s a good idea and how I’ll cope. I have got a new walking stick called a seat stick that has a small perching seat incorporated in it, the idea being I can use that to rest at intervals, this will my first proper use of it. I thought maybe it might take my mind of things as on Sunday, son&both kids will be here at lunchtime, wanting a meal, before Francis goes back to the choir for 2nd service at Cathedral, so that will be hectic again.
To finish, still got my brother texting me, though not as much and I thought as he hasn’t asked again to phone me one evening for over a month, so maybe he’s got the message? But sadly, he hasn’t as despite him knowing I’m going to London tomorrow, the family situation, Sunday commitments, he has texted today asking if I was “around2 Sunday even or early next week for a call!! He will be off for 3 or 4 days and doesn’t like his own company, he never wants to phone if he’s off at a weekend as that’s when he goes “up town”(to London) to go drinking for hours. So he doesn’t give any thought to what’s best for you, he’s really difficult to talk to on phone too so it’s more tiring than ever, especially since the head injury. I was so hacked off last time we spoke on phone, he had asked to rearrange 3 times, so I gave in and when I answered phone, I actually asked him why he was so eager to speak to me. He seemed very puzzled by that question and mumbled something like, “Well,haven’t spoken to you for a while”, I think it’s just habit, it;s what he does. Interestingly, or not, there are 2 other sisters who live in England, who I don’t have anything to do with and he’s close to them. He let slip a while back that one of those sisters, he hasn’t managed to speak to on phone for a long time as “she was never available”, though they see each other still, so I think she was finding it hard going too?
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