"All our dreams can come true, if we have the courage to pursue them"

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 the health diary updates were originally written for a different site than this one. There are some specific topics which are named rather than dated, and these have been put in approximately when I was doing them / they occurred.

CALL THE CRASH TEAM

August 2018 to April 2019

I notice that at the start of my previous update, last summer, I said I had been quite boring in the previous months compared with usual, talk about tempting fate! The period since last August has been eventful to say the least.

Lets start with the major event, I was so ill in hospital at the end of 2018 that I became unconscious and unresponsive, leading the medics on the ward to proclaim, “CALL THE CRASH TEAM” for me. Unfortunately they managed to do this whilst simultaneously ringing up Steve, so rather than their gently breaking the news that he might want to get to the hospital sooner rather than later, like they did to my brother and mum, Steve ends up asking “Is that for Sylvia” and getting the reply “Yes”, slight MAJOR oops.

As you will gather from my posting this update, I did make it through that episode, sorry friends for giving you all such grievous worry on that day.

So why did it happen? In two words, Kidney Stones. As if I haven’t enough trouble with my 5.6cm Bladder Stone, I have to add to my problems by getting Kidney Stones.

On the weekend of the Saturday 8th / Sunday 9th of December 2018, I started to throw up, mainly water, you’ll be glad to hear, due to my drinking so much of it. My temperature also went up. In and of themselves these symptoms are not extreme red flags about my health, because due to the damage MS has done over the years, these things can happen for other reasons, and it does not help that my body can no longer temperature regulate itself. Throwing up water and an increase in my temperature have previously been either the symptoms of extreme exhaustion, or of the onset of minor infections, that had been dealt with through courses of antibiotics. Hence why though concerned, family and carers were not initially overly concerned.  

What can now be seen as a major flag, for the upcoming severe health problem, started late afternoon on the Saturday, this was my pee drying up and then producing no more. Usually when my I am exhausted or on the edge of an infection my pee output though lessened, usually continues to at least trickle out.

There were two reasons for this lack of pee, one was my bodies temperature going up so much that I absorbed all the water that went into me, the second was that a Kidney Stone was blocking the urine from moving from my Kidney to my Bladder.

I am getting a little ahead of myself here, as we knew nothing about the Kidney problem at the time. The lack of pee and my condition did not change or improve overnight, so we called 111, and talked to call handlers and doctors. The outcome of this was by mid/late morning I was waiting for a non-emergency ambulance to come to a take me up to A&E. Around 12.30pm the Ambulance Service rang and said they were getting busier and it might be a while before they got to me, so we made the decision that I would go up to the Northern General Hospital in my WAV. Up there we all traipsed up to A&E, well my brother, mum and carer Claire traipsed, I rolled in my chair.

From round 1pm we slowly progressed through A&E as doctors did tests and attempted to diagnose the problem. I know now, that the lack of pee was the greatest concern to them, hence my having x-rays taken of my abdomen area. During the time I was in A&E I wasn’t completely with it; I was asking Alexa to play me songs like, I’m My Own Grandpa.

I was asking for Alexa, which was at my house, to play songs for me in A&E; I was definitely not running on all cylinders mentally! My brother was trying to get the songs to play via the hospital wifi, but the songs kept stopping as the wifi was not strong enough to play them via YouTube. It does however show how much the infection I had was impacting on me. To cut a long story short, due to these infections I ended up in resus, as my health needed extra careful monitoring as my heart rate was up, my sodium and potassium levels were off, in other words my vitals were a mess.

Once in resus the consensus was that my condition was very serious, that they needed to get a surgeon in to do a Nephrostomy on me. This is putting a very thin tube directly into the Kidney to allow urine to exit it directly and so avoid the Kidney Stone blocking the tube between my Kidney and Bladder.

It wasn’t just my vitals that was made this decision urgent, it was also the fact I only have one Kidney, albeit a big one, meaning there was even less room for manoeuvre.

All this led to me having an operation at midnight to insert the Nephrostomy. They had to call in a medic specially to do this for me. The operation was done under a localised anaesthetic and was successful. After it, at around 2am, I was transferred onto the specialist Kidney ward, Renal E. By this stage I was very very tired and still not completely with it, but at least I was out of immediate danger.

You might remember I earlier mentioned about people traipsing into A&E with me, have you thought about them whilst I was talking about me? Probably not, but just in case you were wondering, my carer Claire left around 6pm, at the end of her shift, she would probably have stayed longer out of concern for me but she had a flight to catch to Jamaica the next morning, so I made sure she went, with the promise that my brother would keep her updated. My brother and my mum both stayed, stayed until they had talked to the night staff on Renal E, this meant they didn’t leave the hospital until gone 3am or get to bed until around 4am. I find that amazing, especially that my mum stayed that long, because she often gets tired much earlier in the day. It shows her love for me that she could, and did stay at the hospital for so long.

As the root cause of my problem was a Kidney Stone blocking my tubing and not acute Renal (Kidney) problems, the next stage of the doctors plan was to send me to a Urology ward, where the Urinary problem could be addressed as soon as I was well enough. The Urology wards are however not on the Northern General Hospital site, unlike A&E and Renal E, but at the Royal Hallamshire Hospital; so I spent the next few days, on Renal E, recovering until they were happy that I had recovered enough to be transferred by ambulance. They originally hoped to do the transfer on the Tuesday, but my Potassium and Sodium levels were still off, so it didn’t actually happen until the Wednesday teatime. Naturally during my transfer between the hospital sites, I was telling the ambulance staff my riddles and jokes, well I did have a captive audience.

I ended up on ward F1 at the Royal Hallamshire Hospital, initially I continued to recover, but then from Thursday afternoon onwards things went askew. My carers, who all seemed to visit me that day, were concerned with how ill I looked, and this was backed up by the doctors, who by the evening were concerned about how low my oxygen levels were. They were also doing blood tests and and e.cg’s to try and determine what was going on.

It turned out there were some irregularities in my e.cg, this was initially explained as me having had a Heart Attack, at sometime since Sunday. This was later clarified by the Heart specialist doctors to being that due to the level of infection in my body, my Heart had been stunned at sometime since Sunday. The difference between this and a Heart Attack, is that a stunned Heart does not suffer long term damage, unlike one that has suffered a Heart Attack. It would be better if the non-specialist doctors had known the specific terminology initially as it would have caused family, friends and carers less worry. My reaction, once I heard that it was not a Heart Attack but a ‘stunned Heart’ was “They’ve taken my Heart Attack away from me, my story isn’t as good now” well you’ve got to laugh haven’t you. Although maybe I should have accepted the verdict happily and instead said “I’ve always known I’ve had a stunning Heart.”

Through Thursday night, into Friday morning, the ward staff kept a close eye on me. It was fortunate they did because at around 8am Friday morning, I suddenly became unresponsive and that was when they had to

CALL THE CRASH TEAM

When the crash team came in they pumped my body full of fluids, I don’t know exactly how or why, but it had the desired effect of stabilising me, though I was still unconscious.

My mum and brother were the first in that day. I think my brother was on the phone most of the morning, if not all day, updating people.

By around 10.30am to 11am I was starting to come round a bit, my brother says my first reaction was to Steve and Marcus’s names. Slowly I came round and became more with it. Steve arrived shortly after 11am once he knew I was recovering, it may sound strange that he didn’t come earlier, but I understand, it’s because Steve wants to remember me as me, not as an unconscious or dead body.

The good thing to come out of this close call is that it reminded both Steve and me how much we love each other, and that neither of us wants me to die. That may sound obvious, but the day to day drudge of MS had hidden it to a degree and we both agreed that we had to do better for each other than we had been doing.

My mum and brother were there all day Friday, after school they were joined by my son Marcus; it was great to see him. Steve then came back again and he, Marcus and I had some time together, after my brother and mum finally left in the early evening.

I think the medics were generally very happy with the progress I made that Friday; although they made the decision to move me from a single room to a ward bed, so they could keep a better eye on me, much to my grumbling chagrin. I wanted the quieter single room, but no, probably rightly, it was not allowed.

Over the next week I slowly recovered, it had been a close call due to all the puss and infection near my Kidney and in my system, but I progressed slowly on the road to recovery. One of the main things they had to do during this time was get the excess fluid they’d pumped into my system, to keep me alive during the crash episode, out; they did this with drugs. As my recovery continued I was at times alert, at times exhausted, but at least my health was steadily moving in the right direction.

They did give me a full body scan to check for signs of a Stroke and anything else untoward, that could have happened during the crash call, fortunately they found nothing, so another worry for them, family and friend to chalk off. Yes little old me, ONLY had MS Brain problems, so we ONLY have these to worry about, ONLY these!!!

I had a steady stream of family and friends visiting me, tiring me, encouraging me, filling my time, enabling me to cope with the fact that there was NO TV on the ward.

Initially the doctors talked to me about my recovery, and about deciding what to do next, what operation options we might be looking at after that. They always emphasised that my recovery was the main priority. Then I suddenly passed the Kidney Stone that had been blocking the tube between my Kidney and Bladder, which meant my pee could run freely down. This and my continued recovery meant that by Christmas Eve the doctors were discussing when to take my Nephrostomy out, a positive step. Boxing day was initially discussed, but it didn’t actually happen until Friday 28th, though it had been clamped and not running since Christmas Eve.

You will notice I was in hospital at Christmas, not the best thing, but not the worst, I’m not sure I would have had the energy for a full on Christmas Day, in fact I know I wouldn’t have had. Thank You to all who gave me presents, I got them slowly over the Christmas period, it was the best way last year.

My Nephrostomy came out successfully and the doctors were so happy, that they were suddenly discussing discharging me the next day, WHAT, I mean yes it’s great to go home, but that soon? The answer turned out to be yes. Due to me being stable, due to the stone having passed, they were happy to discharge me immediately and then discuss operation options at outpatient appointments.

So suddenly on Saturday December 29th I found myself back at home, home for the New Year, when I had fully expected to still be in hospital for it.

My first follow up appointment was on the 7th February, at the Stone Clinic. After this appointment I was referred back to my Urology Consultant, Mr Mangera. An appointment was booked for April, then brought forward to late March, due to a cancellation, to further discuss my options.

However, before that happened nature intervened with more

Ok, maybe they weren’t that big, they were Kidney Stones again, but nature did reintroduce stones to the detriment of my health. This is what happened.

On the 20th February I started to be more ill, I was throwing up water and not feeling well again and towards the end of the afternoon I stopped peeing. As you now know with me that is a flag for a potentially more serious illness. By the time it was really noticed it was 10pm at night and as I wasn’t too bad at that stage, the decision was made to leave it until the morning.

When my carer June came in on Thursday morning she was concerned as I still had not peed and my colour was off and I was hot, so she rang my brother saying we should ring for an ambulance. My brother decided to come down with my mum and the arrived shortly after 9am, by which time June had cooled me down and she was less concerned. On balance the decision was made to call the local doctors out rather than go down the hospital route.

Things were steady for most of the rest of the morning, but after lunch the wait for the local doctors dragged, and as we waited my health started to give more concern. It was sometime around 1.30pm that June became very concerned, she thought my lips were going slightly blue, she insisted that my brother ring 999. The call was made and very quickly an ambulance was whizzing its way to my door.

The paramedics when they arrived did e.cg monitoring, took my temperature etc, and decided there and then to cart me off to A&E. So off I went in the back of the ambulance, no-one came with me in the ambulance because my brother had to make sure my mum and Marcus were both taken care of, as Steve was out of the country at the time.

Shortly after I left in the ambulance the local doctor arrived, before we’d had a chance to call and cancel them. I don’t actually remember any of the ambulance ride or going into A&E, I just know I ended up in hospital AGAIN. Whilst I was being processed through A&E, my brother, mum and Marcus drove up to the hospital and ended up hanging around in A&E where they were joined by Claire, yes she was back from Jamaica.

Naturally because I’d arrived at hospital in an ambulance with my Heart rate and overall condition causing concern, I again eventually ended up in resus. By this time we knew it was likely to be another Kidney Stone, although the more immediate concern was Sepsis. It was decided, because my mum was getting tired, and because she and Marcus didn’t really want to be hanging around the hospital, that my brother would take them home whilst Claire stayed with me.

Claire was there whilst I was transferred onto the Acute Medical Unit for continued monitoring and diagnosis. Sometime during the evening they did a CT scan, to find out what was actually going on. They found out that as well as my large Bladder Stone, which is 56mm at its longest axis, I had an obstructing 17mm Upper Ureteric Stone and a obstructing 14mm Lower Ureteric Stone and multiple new stones in my Kidney.

There we go, me not doing things by halves again. A big Bladder Stone, 2 stuck stones and plenty more on the production line!

Claire stayed until 9pm, when she left I was resting on the Acute Medical Unit, then at 2am, the doctor rang my brother. No, it wasn’t a panic moment it was just to get permission to do another Nephrostomy, as I still wasn’t with it enough to consent myself. My brother gave his permission, so at around 3am I had the Nephrostomy done, after which I could pee out of my back AGAIN.

The next few days were about my continued recovery. On the Saturday I was moved onto Brearley 4, a respiratory ward, still on the Northern General Hospital Site, whilst they addressed the infection, a major bad resistant bug I had developed. I was there for the best part of a week, until I was well enough to be transferred over to Urology at the Royal Hallamshire Hospital on the following Wednesday. This time I ended up on F2. They continued to treat my infection and monitor my Nephrostomy on F2, initially hoping to discharge me, with the Nephrostomy in place on the Friday, although this didn’t actually happen until the Saturday.

On Saturday 2nd March I therefore arrived home, with tubes sticking out of me at all angles, Stomach Peg, Catheter and now Nephrostomy, but a least I was home and well.

Since then it has been a matter of consultations with Anaesthetists and Urologists. So far the plan seems to be that, as I am willing to take the risk and have an operation to sort out my Bladder and Kidney Stones as far as possible, some type of operation will go ahead.

As of mid-April the decisions seem to be that due to MS, and my shallow breathing, that I am not able to have any type of general anaesthetic, but they may be able to consider a spinal anaesthetic. Only maybe because it can be difficult to get the anaesthetic into the spine and with my funny body shape now, may be even more so. The hope is they can which will allow them to address some of the stone issues.

They have said it is probable that they will be able to sort the Bladder Stone out, possible that they will be able to sort the stuck Kidney Stones, and impossible to consider the ones still in the Kidney. Getting the stuck Kidney Stones being dependent on their being able to get passed, and see passed the Bladder Stone. The Kidney based Kidney Stones being impossible I think due to my inability to have a general anaesthetic; although I’m not sure how they’d get them from in there, even if I could have a general anaesthetic.

The key thing for me is that they, we are looking at addressing the issue of the stones, especially the Bladder Stone. I now wish I had gone ahead with the operation back a few years ago, but I know why they, we didn’t, the risk of a general anaesthetic was just too high. Back then they were looking to cut me open to get at the Bladder Stone whole, rather than the option being considered now, entering from below and doing the equivalent of chiseling away at it.

The reason I often now wish they had gone ahead with it, back when, is that since last August I’ve had huge problems with burst and especially blocked Catheters. Back in August the Catheters were popping out after less than a week in place. We worked out this was happening due to the Bladder Stone hitting the inflated balloon holding them in place. Yes, very conveniently the Bladder Stone is situated right next door to where the Catheter enters my Bladder. We partially solved this problem by putting less water in the inflated balloon, which meant the balloon was millimetres further away from the stone and maybe more importantly had some flexibility and plasticity to it, so it is less taut, and therefore doesn’t pop as easily. I say we partially solved the problem, as the Catheters do still pop out with burst balloons, probably due to both the Bladder Stone and possibly due to bits of Kidney Stone descending into the bladder and hitting the balloons.

Stopping the Catheters popping out is one thing, but stopping the Catheters blocking with sediment is another. From August onwards it just got worse and worse, we’ve ended up having to replace some Catheters because they became so blocked, there was no way we could clear them.

What was annoying was that the Catheters would run clear for days and then suddenly you’d have an equal number of days of battling blocked Catheters. It was especially annoying when it blocked just after I settled for the night as it meant I was likely to be lying in pee in the morning, not nice. It has got a bit better with the Nephrostomy in as the pee has more options but it’s still annoying when the Catheter blocks. We have also helped matters by improving the absorbent slip pads I use.

Talking of improvements, I have improved, or am in the process of improving, some of the equipment I use.

Firstly the Occupational Therapists, Jill and Zina, have provided me with a brand new and much more suitable Shower Chair.

It’s much better as it supports my head well, which the previous chair did not. Initially 1 carer could have slotted me into the New Shower Chair without help, if single hoisting was allowed, because it was set up so I slotted between two side supports exactly into the right place. Unfortunately due to my Nephrostomy we’ve had to take the right hand side support off to ensure we don’t bash the Nephrostomy, which makes guiding me into place more difficult and a two person job. We shall see what the future brings as to whether the I can revert to easy slotting after a successful operation or whether with the continued need for a Nephrostomy means the chair may need adapting a bit.

As well as the new Shower Chair the Occupational Therapists have updated my hoist slings to something more suitable to my current needs.

They have also provided me with a living room chair which more meets my needs than anything I have been offered before and is much more comfortable than my wheelchair.

As you can see, it look smart and useful without me in it, and I look comfy and happy in it. The only drawback is that my brother will make me get out of bed more now. He says it should be used and getting into it will be a habit I will get used to. Maybe, but its not a current habit, like bed, so its a little psychological hill to climb and overcome, but I will with encouragement from my carers.

I case your wondering what the white fluff, that is threatening to obscure my face, is, it is a hand protector that encourages my hand to be less claw like and protects my palms from my nails.

The above new equipment has been a great development, but there is still more equipment adaptation and change to come.

Amy, my current Physiotherapist, has arranged for new Starfish Head Cushion which will replace the one Lisa sorted for me in 2017. I need a new one because I have worn the current one out. The new one is going to come with a friendlier covering, which is good as the existing one tends to make my neck sweat. This has not yet arrived but hopefully will do soon.

Also on track, but with no delivery date as of yet, is a Ceiling Track Hoist for my room. The idea is that once this is fitted my carers will easily be able to hoist me single handed into the Shower Chair, Living Room Chair or Wheelchair, thereby removing the need to have 2 carers around when I hoist. I really need 2 carers to hoist me now using my movable rolling hoist, as it is  getting much more difficult for my brother and Steve to commit to being there whenever I want to hoist, though they are the second person most of the time.

A single track hoist therefore has the triple advantage of firstly reducing the long term cost in terms of funded carers, secondly of freeing up my family and thirdly giving to me more flexibility to go out at different times if I want. What, me, little Miss Routine, suddenly changing things and going out at all different times? Maybe not initially, but at least the options there.

Something that is less on track is the reassessment of me and my Wheelchair. I need its suitability checking, especially the headrest, as I keep falling forward out of it. I’ve been waiting for 6 months for a reassessment now, but due to staff shortages I am still waiting. The base of the chair is fine but we definitely need to re-look at the side supports and head support, now! It doesn’t help that the current headrest is bent due to usage making it more likely and easier for me to tip out of it. They won’t replace it now because they have in the past, but its getting less and less fit for purpose as I wait on the waiting list. We have just given them another nudge to bump me up the list as I am reaching an unsafe tipping point in the current chair.

I realise little Miss Routine, Miss Habits reared her head a couple of paragraphs above, unfortunately she is still very much around and hinders as much as she helps my life. Now the carers and I battle over how much water I can drink. Water drinking being my latest mental need, as I see having it as helping me to burp, in my mind this link is very real, though it may on the face of it seem illogical to others. In my head I am more relaxed with a water bottle there at instant access, than when one isn’t. Unfortunately at times the straws mark my mouth and partly for this reason my brother has said I can’t have it all the time, which is harder for me. I am trying to adapt to this, with my carers giving me sips every 15 minute approximately, it’s not ideal but I sometimes agree that this way is probably for the best, because I don’t want to get to the stage I did with water melon, where my need, addiction got so bad that my carers were saying its either water melon or us, Wow, what a shocking position to push my carers to. Just in case you were wondering I chose my carers over water melon, when things got that bad, back in January 2018.

Habits are interesting, with me it’s about having an idea, an idea that links things, that is the backbone of any habit I have. Usually it’s the idea that if I don’t do or get something it causes a negative effect elsewhere. Currently drinking water helps me burp and when I burp, I relax, which helps me burp, a virtuous circle. However when I don’t get water, I get tense, so stop burping, so I get more anxious and tense, a negative circle. The more tired I am the more likely the circle is to be negative.

What’s really interesting is that Water Melon used to fill waters role, but the last time I tried it I didn’t like it’s taste. From addiction to dislike a very short journey, but unfortunately for others I haven’t given up having intense habits, addictions, needs, I have just transferred them.

With me I think the line between enjoying something and needing it psychologically as part of my routine is very thin. In hospital I started having diluted pure orange juice in the day and drinking chocolate at night and now they are part of my routine at home. In the case of drinking chocolate an essential, necessary, not to be dropped, part of my evening routine.

I know working with me isn’t easy, being flexible with me isn’t easy, when often I’m not flexible back. It can be psychologically hard and it can be easier for my carers and family to be inflexible with me. You might argue that the job of the carers is to work for me, be flexible for me; but day after day, week after week that can be difficult, especially if I’m being particularly obstreperous. I know I don’t do myself any favours by acting this way, the reality is that most of the time I can’t alter what I am doing.

This may be part of the reason I’ve always had a turnover in carers, because I’m a specialist subject for carers, although having said that, for the year from February 2018 to February 2019, no carers left. In February however Vern left after nearly 4 years working with me, an impressive length of time. Then at the end of March, June left to work with people in her specialist caring subject, older people with dementia.

Fortunately I have managed to recruit carers to replace both of them, so welcome to my newest carers Carol and Stephen.

They’ve settled in well and it’s great to have them working alongside Claire as part of my frontline carer team. All I need to do now is recruit a bank carer / cover carer and my brother won’t have to worry about being called upon at all if people go on leave or off sick. It’s a more difficult position to fill but I’m hoping we will get one soon.

It was thanks to Claire’s recording me over the last few months that I was able to launch my YouTube channel. Maybe it won’t go viral, but at least my jokes and riddles are out there.

I think the first video is the best

The rest can be found on my March 2019 YouTube Page on this site, or on YouTube itself.

Doing YouTube has speeded up getting my jokes and riddles known, as my book is still a work in progress, because I keep adding to it. If I stop doing that we may shortly be able to ask someone to have a go at editing and reformatting it so it is ready for paper and e-book publication. Don’t hold your breath but we may one month soon be getting to this stage.

Warning, the book does include jokes from Steve and Marcus as well as from me. Some of you might think that’s a good thing, others not!

Marcus is doing well at school and is still a good lad, he into an on-line world I don’t really understand and Japanese Manga, which I also don’t get, but there we are, and are parents meant to understand their kids anyway?

Steve is Steve and he and I together are, and he in himself is, doing better in 2019 than we have for a number of years. He is currently off in Brazil having been in Malaysia at the beginning of the year.

My mum is getting older and she’ll admit, a bit forgetful at times, I think I worry about her more than I need to as my brother is there for her. We are hopefully progressing towards me getting more care funding as well as getting the ceiling track hoist, both of which would mean my brother being able to help my mum more, rather than having to work with me and leave her more than I would like him to. I worry because I can’t control, or help due to the bastard MS, I trust my brother that my mum is still ok and more capable than I worry she is, but I still worry a lot, because she is my only mum. I was especially worried last Autumn I thought she’d been kidnapped and replaced by an alien, see this photographic evidence of the aliens existence, it sat down right next to me in my mums back garden!

I mentioned funding above didn’t I, oh what a fun thing that is. I know your burning question is have my actual funding needs taken into account yet, have my needs been listened to?

The full answer is, not yet, as we are still going through the refunding process.

So far we have had the refunding meeting at which the Diagnostic Support Tool was gone through. At this meeting the CHC Nurse, my social worker and I,  well my brother working on behalf, all had an input.

The outcome of this was the CHC Nurse filling in her recommendation as to whether I should be fully health funded or stay joint Health / Social Services funded. My Social Worker was also able to write up her opinion and submit it, where she disagreed with the CHC Nurses assessment. This ability for my Social Worker to write up her own recommendations separately was fortunate as she thought that in a number of areas I had a greater level of need that the CHC Nurse did.

The reason for the discrepancy between what my Social Worker thought and what the CHC Nurse being in my opinion primarily down to the fact that my Social Worker has been intimately involved with my case for the last year whilst the CHC Nurse had never really met me before. It’s the difference between seeing me once and thinking I’m angel, and knowing me better; knowing that a fallen angel, a devil?, lurks beneath the angelic exterior.

All the information was submitted to panel and the decision made that I was

for full NHS funding and would no longer have joint funded care.

That outcome was the only one that should have happened, but we know from past experience that with funding, what should happen, doesn’t always happen.

That is as far as we’ve got, we are currently going through the re budgeting process. We have argued for and will hopefully get a budget that will increase the hours my carers are funded to do.

I currently get 9 and half hours a day of care funded through the year and a bit more when Steve goes away, what we’re aiming for is 15 hours a day, 7am to 10pm, to help me psychologically cope with my life, with my days. To help my family psychologically cope with my life, with my days.

Will we get it? Hopefully, but not certainly, we just have to wait and see at the moment as tot whether we are listened to

If not we’ll appeal if we can. Fingers crossed we won’t have to.

Mentioning my family psychologically coping with my life reminds me, my Psychologist Nicola wrote up a report last December wrote a report on how she found me cogitatively, mentally, psychologically based on what on the assessments she had done. These assessments were mainly done in the Summer of 2018.

I admit, before I tell you the conclusions she came to, that I am not the easiest person to assess, because I don’t always co-operate with the tools being used, especially if I think they’re stupid, pointless and therefore a complete waste of time.

It didn’t help Nicola either that I can’t see well and or use my hands at all,as this ruled out a whole range of tools and tests she could have used.

Despite being restricted to mainly auditory tools, Nicola did still manage to come to some conclusions including;

1. Overall I would describe Sylvia as having moderate-severe cognitive impairment.
2. She has impairments in the domains of episodic memory and executive function.
3. I have particular problems with Abstract Reasoning within verbal comprehension.

The problem of my not remembering short term is getting worse, I can admit that. It is interesting to note that when something is part of a story or theme, that I remember better than when it is just a random abstract list I have to learn. Some of this must come down to interest, how much point I see in doing it.

I know my emotions get in the way, specific simple reasoned instructions work better than emotional appeals to me, but again only if I can see the point, and if I’m emotional I’m not likely to do that.

It’s not always easy for people to step back and let me calm down; work through my upset to a more relaxed state of mind, but sometimes that’s the only way because trying to get through to an emotionally upset, is a total waste of time.

Sylvie Wright

16th  April 2019

Feel free to e-mail me

STONES

STONES

My New Shower Chair.

My New Comfy Chair.

Me in my New Comfy Chair.

Me and my new carer, Carol.

Me and my new carer, Stephen.

Me and an Alien!

! HOLD THE BACK PAGE !

We can’t hold the Front Page, this time because it has CALL THE CRASH TEAM, on it and and I’m not planning a page 3 moment right now, so it will have to be the back page held to announce, I ENDED UP BACK IN HOSPITAL AGAIN, even before I could get this latest update up on the web.

These hospital visits are getting too regular! Not Good!

Why it happened this time is a similar story to the previous two times but with enough variation for it being worth you reading on. On Tuesday 16th April, I was doing fine, no real illness out of the ordinary to report, I bedded down as usual; but by Wednesday morning my temperature was up and I had peed little overnight. At 7am my brother gave me a paracetamol to help reduce my temperature and left me with a cup of water, usually banned, to help re hydrate me.

Stephen came in at 9am and we continued the morning as usual, but I still not peeing much, so just after 11am he consulted with my brother, who decided that the lack of pee was a problem and therefore rang the local doctors and asked them to come out on a home visit. Just before 2pm Dr Chambers came out, took my temperature, blood pressure, listened to my heart etc. She decided there and then I needed to go by emergency ambulance to A&E as she could see the potential for my vitals to deteriorate further very quickly.

So for the second time in a couple of months off I went up to A&E in an ambulance. My brother and mum followed up in his car and met Claire, who was just coming on shift, at A&E. Sorry Claire I must stop dragging you up to the hospital like this.

A&E was very busy, so it took a bit of time to be processed and seen. My temperature was way up 39.5, and my heart-rate up too. Once they got some fluids, paracetamol and antibiotics into me my temperature came down and I became more lucid.

My mum and brother stayed until shortly after 6pm and Claire until after 9pm, thank you all for staying with me. Fortunately for them they could leave, unfortunately for me I could not; I had to endure a noisy night in A&E and the in the Acute Medical Unit.

Late on Thursday morning I was transferred onto Brearley 3, a respiratory ward. The initial presumption was this would just be for a short while, before I was transferred to one of the Urology ward at the Hallamshire Hospital.

This didn’t happen though as there were no beds free in Urology and because they decided they could sort my problem within the Northern General Site and enable my recovery to eventual discharge, on Brearley 3.

What was the problem? It turns out that the issue was that my Nephrostomy tube had blocked so my urine was struggling to get out of my body and therefore causing internal stresses, which led to my temperature and the infections.

To try and avoid this complication again, they replace my existing Nephrostomy with one with a broader tube, this happened on Thursday afternoon, at the time when I should have been having an outpatients appointment to further the surgery to removed my multiple stones. That was / is annoying as I really want to sort and go ahead with the surgery and sort out the stones that can be reached.

I eventually made it home on .Wednesday 24th April; Just to be faced with Personal Independence Payments (PIP) paperwork!

Yes the Department of Wally’s and Prats, I’m sorry I mean the Department for Work and Pensions, has finally got round to sending me my transfer from DLA to PIP,paperwork I was hoping I’d been permanently forgotten by them, but unfortunately not.

What fun, we shall have in the next few months, PIP, a Bladder and Kidney Stone operation and further funding budget discussions!

In regards to PIP there is no way I shouldn’t get it and the maximum amount, but with the Department of Wally’s and Prats you can never be 100% sure. If I don’t get it, they’ll hear the explosion of anger in Hong Kong.

We’ve just had an update on the installation of the Ceiling Track Hoist, it will hopefully be put in on the 10th May.

In case you were wondering how I keep surviving all these lack of good health events, we’ve worked it out. Just be warned what we’ve worked out means I will live forever and never die! How Come? Well, we’ve worked out that because I cannot walk, I can never be on my last legs, and if I can never be on my last legs I can never die.

Hopefully it will be a less eventful update next time.

Sylvie Wright

29th April 2019

STONES

STONES