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MY AUTOBIOGRAPHY OF MS

The dates on the links below are when the updates to my autobiography / health diary were completed. The updates usually cover the time period since the previous one. There is overlap in what I wrote as health diary they were originally written for different sites. There are some specific topics which are named rather than dated, these have been put in approximately when I was doing them / they occurred.

1996 - 2000

March 2001

September  2002

Florida

My life to 2002

April 2003

June 2004 H

July 2004 H

January 2005 H

February 2005 H

September 2005 H

September / October 05 H

November 2005 H

March 2006 H

June 2006 H

September 2006 H

April 2007 H

September 2007 H

May 2008

July 2009

September 2011

September 2012

June 2013

December 2013

May 2014

Unpublished articles

January 2015

June 2015

January 2016

March 2016

August 2016

February 2017

July 2017


Updates List

I’m Anxious about being too Anxious - February 2017 to August 2017


Time for another update, on what has been a tumultuous few months since my last update back in February and I think this time the starting point for the update has to be my health. The reason for this is that back in April I came down with a bout of pneumonia, which definitely was not a good thing.

 

Why did I come down with pneumonia? That is not something that’s easy to pinpoint precisely but it was probably a mixture of the fluctuating temperatures of the spring, my body being unable to regulate its temperature - a minor issue causing me to create phlegm which then seeped down into my lungs, plus plain bad luck.


Fluctuating temperatures of spring are bad, as they mean my body has even less clue than normal about what’s going on around it, plus its harder for me and my carers to get the amount of clothes on me correct all the time than it is during the more consistent temperatures of summer and winter. If we get it wrong, well my carers get it wrong, as honestly I have little clue as to what is right anymore as my body’s feedback to my brain on the matter just isn’t there. I’m more likely to get a chill from cold or from overheating. I’m not blaming my carers for getting it wrong. I can’t because, unfortunately, I am nowhere near an exact science when it comes to care needs. It comes down to experience with me and educated guess work.


I usually don’t know there is a problem before there is one, I am therefore reliant on my carers being constantly on top of checking everything to make sure I don’t become over or under heated. The reality is the MS has completely knackered that part of my body’s communication and feedback system with my brain, and this is now something we all have to cope with.


Minor issues causing phlegm are many and varied, from a bit of food or irritant stuck near the voice box, a slight head cold, a minor upper respiratory infection, me panicking, my anti-saliva patch not working, plus many more that come and go.


Bad luck comes in a number of steps, firstly with getting the phlegmy mucus for some reason, secondly through the phlegmy mucus migrating to my lungs, thirdly through the phlegmy mucus getting infected once it is in my lungs and fourthly on the virulence of the infection. You’ve guessed it this time I had bad luck on all four stages as I went from having no phlegm on the Friday to having infected phlegm on the Sunday, and a temperature of 39C on the Monday before there was any chance of us treating and beating the infection with antibiotics at home. Instead it was off to hospital with me, and an intravenous aggressive anti-pneumonia antibiotic treatment for me.


I probably overheated a bit in the sun in the days before I got the infection, as it was the first real hot weather of the spring / summer and I was sun and shade bathing outside. This may have been a contributory factor, but overall I think that it came down to the bad luck of a very active bacterium beating my respiratory system up. Maybe also it may come down to the fact that I am now at the stage of MS, after 23 years, where it becomes inevitable that I will occasionally get infections and pneumonia because of the damage MS has already done.


Fortunately the proactive decision from my local doctors to send me straight up to the Northern General Hospital for tests, x-rays and admission meant that in the range of how bad pneumonia can be, we caught it early which meant it didn’t get as bad as it can, nor as bad as the previous two times I had pneumonia in 2013. I was more with it this time and did not hallucinate that people, including Marcus, were drinking cups of tea in discos.


This time I was aware of what was going on, but me being me I was not happy with that. No. I complained that I wanted the pneumonia to be worse, because then I wouldn’t be aware that I was ill. That’s mad isn’t it, wanting to be more ill with pneumonia, but that’s me and my logic - bonkers. Actually what I think it shows is that the pneumonia, the infection, was still quite strong and affecting my brains computing power, although my brother might disagree and just say it was me being me. I think it was the infection, because in the first five or six days in hospital I was also in overdrive mode in telling riddles and jokes to everyone on Brearley 1 ward; yes in overdrive mode telling riddles and jokes. Can you believe it, given how much I tell them normally.


In the end I was in the Northern General for just over a week, coming out on the Wednesday of the week following the one I went in on. I was a little surprised they let me out as quickly as they did, as I still had some phlegm in my lungs, but they released me as the infection had cleared. Actually I was probably happy they’d released me, as I was going home, but also angry and annoyed as I still had phlegm in my lungs which I was very anxious would become re-infected, despite the doctor assuring me it would dry up.


To prevent re-infection and to help get rid of the remaining phlegm in my lungs, I was referred to the Community ‘Respiratory’ Physiotherapists. I can’t say that my relationship with the Community Physiotherapists was the most amicable because I got it into my head that because they were moving the phlegm from my lungs, where it could do most damage, to the upper respiratory system, where I could hear it more, they were actually causing me to have more phlegm and making me more ill. Mad but true. When they came to see me I would get emotional and panic, which didn’t help with the breathing exercises and the Physiotherapy. Despite this, I have since managed to kick all the phlegm and mucus from my system and been signed off by both the Respiratory Clinic and the Community Physiotherapists.


Being on the ward was a bit of an experience as the other people on it, like me, also had other medical needs on top of their respiratory needs, including one lady who didn’t really know 100% that she was in hospital. This lady kept planning to leave, having supposedly just driven in that day, rather than having been in for weeks. The nurses also had to keep an eye out so that she didn’t escape off the ward. The world is full of all sorts of different people - it really is!


One of the effects of being in hospital with pneumonia was that I lost weight. I went from approximately 7 stone 10 pounds before it, down to 7 stone a couple of weeks after coming home. This had Sean my (Stomach) Peg dietician a little worried, so we reviewed my food intake and decided that rather than trying to force my entire calorific intake into a few hours during the day, it would be better to have me drip fed a good proportion of it during the night. I readily and wholeheartedly agreed to this change as I wanted to put on weight - and because I had been getting very anxious about having any Fortisip feeds during the day - something that could now be done away with as my daytime calories would now come solely from eaten food.


The good news is that I am now back up to 7 stone 10 pounds, so it looks as if the only worry now is that I don’t get too heavy, but nah that won’t happen because Sean will reduce my intake at night to make sure it doesn’t happen if I were to continue to pile on weight at the current rate.


As you would probably guess, I regularly access a wide range of NHS services, recently I have been getting help from The Neuro Enablement Service (NES) Physiotherapists who have been working with the District Nurses to ensure that I have supporting cushions that meet the needs of my body as well as complementing the work my beds air mattress does. This means I now have a starfish cushion which supports my head positioning much better than an ordinary pillow. This is because the starfish legs can be folded and attached to triangular wedges with Velcro, thereby propping my head up away from the direction it tends to lean.

I also have a banana cushion which helps tilt my body so I don’t get sores from lying in the same position all the time.

Banana Back Pillow

Unfortunately it has also meant I have got a new improved bean bag for my legs, I say unfortunately because I still prefer the older one. The new one has memory foam inside and is made of a material that will rub against my legs less, and - don’t get me wrong - both of these things are good, but unfortunately the material is less breathable than that on the previous bean bag.

New Bean Bag

Old Bean Bag

Overall I prefer the older one, this means Lisa the physiotherapist, who helped me get both bean bags, has now lost the goddess status she attained for procuring the first bean bag. Sorry Lisa, you are now demoted back to Apprentice Goddess status. Before I forget to mention it, Sean is now at God status for producing the night feed option.


I have also been working with the Occupational Therapists who have procured me a head support for my shower chair, so I no longer practically lean out of it. They also procured new hoist slings, which support my head much better.


They’ve also replaced my bed air mattress with a much better one, as the original was not pumping up properly, so it wasn’t doing its job; in fact I was settling into a depression within it.


Also through NES I have got a new push button system that does more than just replace my current alarm buzzer, which I was looking to replace as it was getting too hard for me to press and activate. The new system has a new bigger button which, as well as being easier for me to press for help, also allows me to find out the time, turn my TV on and off, turn my fan on and off as well as currently enabling me to turn my CD / radio player off. This is because the CD player is so old it doesn’t have the remote capacity to play the CD again once it’s been turned off. Despite this, the new system will be a great improvement on what I have now; maybe once I have a new cd player that can be restarted I’ll promote Nicola, who is sorting this out for me, to goddess status, just to make Lisa jealous.


Unfortunately the great progress you can see with the above services can’t be said to be happening with the mental health side of things - help I need because at times my anxiety is running riot.


I have started to work with another Nicola from NES to look at whether due to MS progressing, there is a cognitive change in the way I am thinking and remembering - one that has led me to be more prone to being anxious and panicky. It will be interesting to see if there has been a change or not cognitively or whether my increased anxiety and panic is just a compulsion, just a learnt behaviour. It is in this area of combating my compulsions, my learnt compulsive behaviour, that I am getting NO help. Nicola has been trying to access other services for me but it’s as if my needs are too complicated for the entry level services but I’m not manic enough for the advanced level services. It seems I, along with a high percentage of the population, do not fit into a neat mental health box and therefore we miss out on help, proving what is generally known, that the mental health service is one of the, if not the, weakest area of front line NHS services.


The problem with anxiety and panic is that when you are gripped by them you can’t emotionally see how ludicrous what you are saying and doing is - something you can see at least to a degree, when you are not in its grip. Recognising its lunacy, however, is a very different thing from being able to deal with it when it arrives or being able to prevent it arriving, especially when you are tired. This is where the help from outside services, married to a want to change things, is important. The current problem is even at the times when I want to make this change, the support is not there to help me make it.


The problem of anxiety and the reactions it causes in me are big, as it causes emotional repercussions for all my family and carers, which is not what I want at all, but something that at times I can’t stop at all.


Things have got to the stage where the amount I am anxious is different, with different people in the family and with different carers. I have got myself into the position where I am winding myself up and am more anxious on the days my brother does care, so much so that he has said, for my own mental health, that he will in the near future give up doing care on a regular basis for me. After 4 years he is saying enough is enough.


Unfortunately he hasn’t been able to step back from doing care as immediately as he / we would want because it turned out that some of my carers didn’t care. I can’t really go into too much detail, because as an employer I always have to consider how any potential employment tribunal might interpret things.


What am I dancing around the houses, in my wheelchair, about? The fact that we have for various reasons, none of them my fault, ended up with both Natasha and Lisa stopping working for me recently, so we are now in the process of my having to yet again recruit new carers.


If I can get carers who are able to stick around and work with me in the way Vern and Yvonne do, I’ll be laughing. If not I’ll be recruiting in 6 months again.


Talking of care, leads me onto my care funding, remember that,

                                                                                               saga. Well shortly after the last update, Clinical Health Care (CHC) finally made a decision on how little of the joint funding from them and Social Services, they should pay for.


They decided that my health needs only account approximately 20% of my overall needs,

Me, someone who is bed ridden and is susceptible to pneumonia, to bed sores at any moment and who is also monumentally anxious, has only 20% of her needs related to health

Can you tell if I agree with them or not?

Fortunately Social Services have really stepped up to the plate and though my care funding budget has dropped, it could have been much, much worse. Social Services have filled the most of the funding gap that the CHC had left, a gap of around £500 a week. Social services have done this by allowing me one of their biggest budgets for any one person. Thank you Sheffield Social Services; with your funding and with my family putting in some extra ‘top up’ money, I’ve been able to keep my current number of care hours going, a level at which I cope.


So how about that re-assessment from CHC, that was due last July, I hear you cry, well, what about it? Naturally given that the CHC is tasked with doing it, it hasn’t happened yet, 12 months on and not a squeak of communication about it from that

                                                                                    organisation. They don’t even bother to respond to emailed queries you send them. Actually

                                                                                   is too kind a word to describe them, as they are

We’ve decided that instead of chasing their incompetent asses, we’re better off getting on with life, as chasing them will make no difference, as chasing imbeciles is not fair on them, plus the fact they might cut my funding further if I do see them. What, I hear you cry, well why not, they have already proved themselves

Talking of incompetence, no let’s not, let’s talk about something positive and good, let’s talk about Marcus. Wow I can’t believe how tall he is, how old he is, how mine he is.


My boy just got a report card from his last year at junior school, on which the head teacher wrote he was one in a million, wow.


Not only that he has solved the 2x2x2, the 3x3x3 and the 4x4x4 Rubik cubes

Rubik Genius

In the last 6 months Marcus has also taken up the Trombone and he regularly gives me Trombone practice recitals and I must honestly say he’s progressing very well. He’ll be continuing his lessons when he goes onto Silverdale Secondary School in September


And what of my book?, well due to lack of carers caring, it’s been on hold since my last update, but at least I’ve still managed to do more poems and get them up on this site during the last 6 months. If you haven’t read them already, they’re available through these links.


John Shuttleworth poem


Mainly Marcus poem


In the Mainly Marcus Poem there is a line about Steve where I say “And to Marcus he can be a bitch”. Marcus has told me I should change it to,


“And to Marcus he can be a b****”. (Censored by Marcus)


Maybe I will, do you think I should?


Talking of Steve and Marcus, they have just got back from another camping holiday in Wales.


Since then my TV had a major malfunction, which I’m really pleased about as it means that I’ve got a brand new flat screen TV with a much better quality screen and picture. My eye sight is not as bad as I thought it was, the new TV I love it.


I’m now nearing the end of this update but there’s still time for a joke I made up


Q: Why can’t Santa be fired?


A: Because he already has the sack and is still in his job.

Starfish Head Pillow

Starfish Head Pillow with Wedges

Trombone Recital

Sylvie Wright

6th August 2017

1996 - 2000

March 2001

September  2002

Florida

My life to 2002

April 2003

June 2004 H

July 2004 H

January 2005 H

February 2005 H

September 2005 H

September / October 05 H

November 2005 H

March 2006 H

June 2006 H

September 2006 H

April 2007 H

September 2007 H

May 2008

July 2009

September 2011

September 2012

June 2013

December 2013

May 2014

Unpublished articles

January 2015

June 2015

January 2016

March 2016

August 2016

February 2017

July 2017


Updates List

Feel free to e-mail me

Mail: brown.websites@gmail.com?subject=I Be wRight A19