"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.
Water Water Everywhere
but not a drop to drink
April 2019 to November 2019
Looking back, I think you could say my previous update was eventful, this one, well I won’t say it tops it, that would be difficult but it at least gives it a run for its money.
I’ll start with my medical health as that is always one of the central two pillars that dictates if my life is in balance. The other being my mental health; a fun topic all of its own.
Perhaps slightly surprisingly, just over a month after being discharged from hospital after my last medical emergency, I was back in hospital for a pre-planned operation. I was admitted to the Hallamshire Hospital on Tuesday 28th May for the operation the next morning. The operation was to remove my large, 5.6cm, Bladder Stone via key hole surgery under a spinal anaesthetic. Due to MS, pneumonia and other infections in the past, my breathing is no longer deep enough for the Anaesthetists to be prepared to give me general anaesthetics as they are not certain they could bring me back round from one, hence the only option being to do the operation using a spinal anaesthetic.
On Wednesday 29th May 2019, I had the operation to remove the Bladder Stone. Even though it was under a spinal anaesthetic and not under a general anaesthetic, this did not mean it was a simple or a risk free operation; the opposite actually, they told me it was high risk because of the heart attack I suffered in December 2018.
Yes, I was now told that I HAD HAD A HEART ATTACK, type 2 I believe, not just a stunned heart. The key to a successful outcome I was also told, was me staying calm during the operation, because if anything went wrong heart-wise there would probably be little they could do. Yikes.
Why did I go ahead with the operation if this was the case? Because on balance the risk was worth it, if I hadn’t gone ahead I’d have been at constant risk of putting my only Kidney at risk of feedback from my Bladder and the Bladder Stone; risking getting Sepsis from Kidney Stone blockages and be putting my Heart at risk from extra strain if I did get any bad infections.
Therefore I went ahead with the operation. How should I describe the operation and the drilling that I could hear as they chipped away at the Bladder Stone, well it sounded like I was in a workshop. Fortunately the Anaesthetist kept me distracted and had me telling jokes and riddles for the 2 hours the operation took, if she hadn’t I’m not sure I would have coped with all that drilling, the boring operation, for as long as I did.
The operation was a success, and I was discharged home on Friday 31st May. Unfortunately once home we discovered that my stomach peg had been pulled out, for second time in a few days, it had already happened once on the ward, so we had to sort that out pronto.
In June and July my health was generally fine, though blood tests showed my salt levels to be on the low side of a healthy norm and my stomach peg would occasionally pop out. My health was good enough to be called back for a follow up Urology operation; this one to wash out the remaining detritus left after the first operation. I was admitted to hospital on Tuesday July 30th, had the operation on Wednesday July 31st and was discharged on Friday August 2nd. The original plan had been to send me home from the Hallamshire on the Thursday, but a slight temperature delayed this by a day. The operation was again a success, despite the similar risks involved.
So there I was happily returning home from hospital on the Friday, but by Sunday afternoon I was back in again. It turns out you can’t keep me out of hospital this year, no matter what! This time it was because my stomach peg had come out again for the nth time in the two months since the end of May.
To cut a long story short, we and the Peg Nurse team couldn’t be sure that the stomach peg had gone back in correctly this time, so I was ferried off to A&E at the Northern General Hospital again. The ins and outs of the reasons why A&E are at lot more involved than that but the intricate details do not matter. At 2pm an ambulance was rung for, at 2.30pm it arrived, at 3pm it left with me in it for A&E where I was processed by the nurses and eventually saw a doctors at around 9.30pm. My hospital admission paperwork says I was admitted on Monday 5th August, the same day I was later discharged, meaning the process of admitting me took over 9 hours from arriving at A&E.
Guess who was on shift whilst I was in A&E, yes you’ve guessed it, Claire AGAIN. Again she stayed late until after the doctors had seen me and I was on my way towards a ward for the night. Neither of us could believe how rammed A&E was that Sunday. I decided then and there I didn’t want to return to A&E again on a non-emergency trauma basis. So far so good on that pledge.
A lot of sleep was not had that night, so the next day I wasn’t the happiest bunny in the field, but by the end of the day I had a new peg in situ and one that was less likely to pop out than the previous one. The reason for it being less likely to pop out was that the decision had been made that the expandable balloon that holds it in, should be filled to an 8ml capacity rather than the usual 5ml level. The good news is that so far, the new peg hasn’t come out once and so I haven’t return to hospital for the reason of traumatic stomach peg expulsion.
We have since then tried a Velcroable pouched belt to try and protect the peg from being pulled out by me by accident, but the belt caused sweating and soft wet skin round and under the peg, not something we want, so we’ve dispensed with it as not a good option for me.
I’m sure that seems enough hospital excitement for one year, it does, doesn’t it, but NO it wasn’t, I had to go and play another round of lets go to the hospital. This round occurred at the end of August, at a time when I was actually doing very well and seeing lote of Liz’s, well both my friends called Liz anyway, one with her family on Thursday 22nd and the other on the Saturday 24th, then suddenly on Monday 26th August, problems.
My carer, Carol came in on the Monday morning and found me not to be me, and not in a good way. Sylvia the Alexa addict, Sylvia the TV addict, Sylvia the water addict, wasn’t interested in those things, I didn’t even know what they were, weird. Carol checked my temperature which seemed ok, but she was not happy with things so she called my brother who came down with Grandma.
The weird thing was that my symptoms didn’t make sense in terms of what they knew from my past medical problems. Temperature, no, that seemed to rule out Sepsis, pneumonia or a bad infection. Stopped peeing, no, that seemed to rule out more Kidney Stones. Naturally this didn’t happen on a day we could get a home visit from the local doctors, no it had to happen on a Bank Holiday.
They started by ringing 111, this was in the late morning. Symptoms and medical history having to be discussed at length, not something done quickly with little old me. Eventually the sensible decision was made that the local GP Collaborative, holiday on-call doctors, should be involved. They rang back pretty quickly and my symptoms and history had to be gone through again. It was around lunchtime by now; the outcome of this call was that a doctor would call in on me in the next couple of hours.
All well and good, so far, unfortunately the doctor who came out, was very reliant on my families knowledge of me to help with the diagnosis, but as I’ve said I was presenting different symptoms than they’d seen before; being non-communicative, grunting, but having a normal temperature and peeing freely. An added complication which didn’t help with any diagnosis was that I’d had two teeth extracted the previous Monday and people were wondering if this was the origin of the problem. It wasn’t, but that wasn’t known at the time. The doctor left having prescribed and handed over antibiotics. It was by now between 2pm and 3pm. Shortly after this my brother took Grandma home and Claire came on shift and took over care duties from Carol. Yes Claire was now on shift, so you can guess what happened next, yep things took a turn for the worse.
Shortly after 6pm, all hell broke loose, I start fitting and foaming at the mouth, which unsurprisingly upset Claire and got Steve calling 999. Naturally he ran into a jobsworth, who wouldn’t answer the simple question about whether the ambulance was on its way. It was. Steve had to hang up and redial for a different ‘sensible’ 999 operator in the midst of this mayhem, not good. The ambulance was actually very close as it happened to less than a mile away when the call went out. Sorry to the paramedics for delaying the break they were about to take, but thank you also, I really needed your speed that day.
The ambulance screamed quickly up to outside the house, the Paramedics did their usual assessments, and then quickly load me up and we headed up to A&E at the Northern General Hospital, lights flashing and sirens blaring, no waiting around this time it was deemed to be a serious emergency. No long waiting around in A&E either, I needed immediate assessment and attention.
Thankfully Claire was with me all the time to assist the doctors if asked, with my brother at the end of the phone, if needed. There was no way he could be there because Grandma needed him at home. Thank you again Claire for again being my A&E companion, I really don’t mean to do this to you so often, it just sort of seems to happen this way.
Unsurprisingly I was admitted to hospital. What their tests discovered was that my salt levels, Sodium and Potassium, were very low, one charge nurse said she hadn’t seen any so low. Why were so low? It was the cumulative effect of my drinking a UK gallon of water or more a day over an 18 month period; I’d washed the salts right out of my body to dangerously low levels. The effect on my consciousness was that I lost 3 days, I do not remember that Monday or the Tuesday or Wednesday following as during those subsequent days I was just a recovering body in a bed, that the doctors were trying to incrementally and safely increase the salt levels within. If they’d done it too quickly that would have been equally dangerous, it could have poisoned me.
As I understand it, low salt levels sent my hormones out of whack and made me retain more water exacerbating the situation; leading to a position where my brain was unable to function properly. The signs that something was badly wrong, were my general lack of awareness, an inability to communicate and a sensitivity to light.
They’ll know for next time, hold it, there will not be a next time!
The light sensitivity was something that was there as I recovered in the hospital, I needed a mask over my eyes as everything was too bright. At the beginning of the recovery words were also missing from my vocabulary, turn out the blank, was turn out the light. It just shows how complex the brain is and how it all has to be in sync to work well.
I really didn’t like being in the hospital, especially when on my own as the nurses and assistants on the ward were more used to working with diabetic or anorexic patients rather than weird cases like me. Thankfully my carers were with me a lot of the time, which helped as I had a someone with me, but it did not help me GET WATER.
The damage was caused due to the skin sweating under the plastic peg ring and it not being kept dry and the subsequent digging into the wet skin by the plastic peg ring as my body pushed against it. Fortunately through the care of my Carers and the District Nurses, both wounds have healed nicely.
Sensibly I was discharged from hospital on no salt reducing medications, actually most had been changed before the salt level emergency. The change from tablets and capsules to liquids is HORRID the liquids taste yucky. The medication change along with a medically ordered water restriction mean that the last time I had my bloods done my salt levels were good, hurrah. I am however going to have 8 weekly blood checks to make sure they stay that way, they should do due to the medically ordered water restriction in place.
Despite knowing I went unconscious, I did not initially understand or accept the need for the medically ordered water restriction. I think this was in part due to my brain not being up to full speed again, but it was also my water addiction rebelling. It was only when Sean, my Peg Feed Dietician, explained to me that both
did the need for it get through to me.
This does not mean that I don’t still hate the fact that I am only able to have 1 litre of fluid orally a day, 200ml of soup, 200ml of hot chocolate and 600ml of water; but as Sean told me I am fortunate to be getting this much.
A true strict interpretation of the water restriction rule is 1 litre of fluids in total, not just orally and daily I have at least 300ml of water through the peg for different reasons and on four nights a week I have a nutritional night feed which accounts for 500ml of fluid each time I have it.
My reality is that I’m currently having between 1.3 litres of fluid to 1.8 litres of fluid daily not 1 litre, because I’m being allowed the light looser interpretation of the rules.
Thankfully that is the case, I cant imagine
OR EVEN WORSE
It is a mixture of being let off this, and Sean getting through with the implications of having too much water again, that has allowed me to generally accept the current regime. My carers will tell you I don’t like it and that I can be a pain about it, but I generally do accept the need for it and fortunately for me the blood tests have so far shown that its fine for me to be on water restriction light, phew.
Another side effect of my time in hospital this time was increased deafness, its not as bad as it was, my brother complained the loudness in my room was like a disco, but its still there due to waxed up ears, which are currently being sorted. I reckon my vitals going out of whack probably caused extra oozing in the ears, lovely.
During the lack of salt hospitalisation I had an all body CT scan and this has since helped the Urologists to confirm that I no longer have any stones in me, the Bladder Stone is gone and the Kidney Stone fragments have washed away. So I hope you now understand that I only drank too much water and became so unconscious that I had to be rushed to hospital, because I was trying to be helpful to the Urology team. The Ultrasound and X-rays since have confirmed that the mild haematic bleed caused my Nephrostomy blocking in June / July is of no problem either, so now I just have to go back for 6 monthly checks and reviews.
Another medical specialist who is happy not to see me again, is the Liaison Psychiatrist as I am doing ok mentally, actually I am probably more positive and better behaved than earlier in the year. The reason he has signed me off is that the drug he was considering swapping in was a potential salt reducer, this and the fact I’m doing fine on my current regime of drugs, means he’s happy for me to continue as is.
That doesn’t mean I don’t need specialists, I’ve probably had more appointments recently with a wide range of specialists than for a long time.
I was referred back to to Orthotics, because my hands are more crabby and the old hand splints were no longer appropriate. I have now got nice new ones which are much better.
Orthotics have now signed me off their books as sorted, hopefully the same will soon be the case with Wheelchair Services who are currently moulding me a new made to fit wheelchair. They have warned me due to my posture it will either be a success or a complete failure. No middle ground with me I’m afraid.
Mentioning the Wheelchair reminds me that the Ceiling Track Hoist was put in as planned in May. It is a great improvement on using a wheeled hoist. I can now easily be hoisted safely by 1 person. We do this when hoisting me into the shower chair and day chair. We still hoist with 2 people when hoisting into the current wheelchair as it is a more fiddly business, but maybe the new wheelchair will change this, we’ll just have to wait and see.
Another service I’m still working with is Dentistry, I mentioned earlier having teeth, well roots actually, extracted. I’ve had 4 out recently, the second time one of the roots was recalcitrant, but rather than saying stop, I was saying get it out. My brother says I’m worse with fillings than with extractions, that doesn’t make sense does it? Or it least it wouldn’t make any sense if you were talking about anyone else but me. Fortunately / unfortunately I’ve now had all the extractions done and its only fillings / maintenance to go.
I have now completed my medical updates for the past 6 months, but there are those of the rest of the family still to be related as almost immediately after my last update; we had a day of family injuries, that didn’t involve me.
Oi; Family your not meant to take the attention away from me!
It all happened on Thursday 2nd May 2019, naturally when Steve was out of the country. First my brother got a call at about 2.30pm that Marcus had dislocated his knee in the corridor at school and was currently lying in the corridor waiting for an ambulance to arrive.
Because we didn’t know the timescale's involved going forward, it was decided that Grandma would go with my brother and be with Marcus rather than have her stay with me and my carer. This is because Grandma is most happy, later in the day when she is with my brother, as this is ‘normal’ in life.
Oh dear, wrong decision because on the way into the school there are some very big steps, too big really, and Grandma tripped up these and toppled over in a lot of pain. The school was very good and fetched a wheelchair and then wheeled her in so she could be with Marcus who was still lying on the corridor floor. It was brave of Grandma to do this, we found out later.
Eventually around 4.30pm the ambulance arrived. Marcus was given gas and air to help with the pain and was helped onto the stretcher with very little grumbling from him, which impressed the paramedics. The paramedics recognised Grandma and my brother, because coincidently they were the team who had rushed me into hospital the week before. They were very happy to know I was back home again. They also recommended getting Grandma properly checked out at A&E. Fortunately by this time Tigga was out of work and had arrived at the school and so was able to accompany Marcus to the Children’s Hospital A&E whilst Grandma went to A&E.
So Marcus went off to Sheffield Children’s Hospital A&E by ambulance, where he was diagnosed with a knee fracture as well as a dislocation. The dislocation was sorted,but his knee was too swollen to fully diagnose all the damage there might be. So for the next two weeks he struggled around Tigga’s house and our house, leg braced up. He got time off school, which was good or bad depending on the lesson missed. Eventually MRI scans showed a natural weakness in the knee and ligament damage and that physiotherapy rather than surgery was the best way forward.
Grandma transferred from the wheelchair into her car and my brother drove her to A&E, fortunately as it was late in the day my brother was able to park close to A&E, but it was still a bit surprising that Grandma managed to hobble into A&E. Once called, after a shortish wait, Grandma was placed on a stretcher and helped. It turned out that Grandma had a fracture at the top of her left femur. The reason she had been able to walk was that it was smallish in size and of a nature that still allowed the leg to be weight baring.
Grandma was admitted to hospital and orthopaedics operated on her on the Friday. She surprised the ward by walking around on the Saturday. She was discharged the following Saturday, surprisingly quickly I would say. Unfortunately since then one of my rooms doors fell and unfortunately hit the same leg, and whist it didn’t break anything it did bruise the muscles and definitely set her walking back. Accidents they really are annoying, but how can you anticipate them, you can’t.
I would have preferred that accident happen to me, not to Grandma, she’s too nice for accidents to happen to. My carers would agree about how nice she is, she’s always thanking them for helping me.
Talking of carers I now have another new Carer, Olivia, who is currently doing 1 shift a week, plus cover help.
I did have another carer, Heidi, start and finish in June, it didn’t work out, you have to have a certain type of temperament to work with both me and Steve.
In further news related to Carers, the great news is that I have now received a funding increase, so I can employ them to be with me for more hours. The CHC / CCG heard me.
Water Water Everywhere
I did not understand, I did not want to understand, I could not understand that I was on a severe water restriction, for my own good. I could not understand because my brain was still not cognitively functioning well enough for that.
I was in hospital for 8 days, well that’s what I remember, it was actually 11. I was discharged sooner than the family was expecting, due to a communication breakdown between them and the ward. My state when discharged home on Friday 6th September, was physically recovered, by medical stats, from my low salt levels, but not totally mentally recovered, I was still light sensitive and slightly confused. Steve has video from the Saturday morning on which I state I will drown if I don’t get water.
I was also not physically well. I may have recovered from the salt saga but I came out of hospital with a bottom sore, as they hadn’t used a motorised pressure mattress, they’d only repositioned me regularly-ish on a standard mattress. No you don’t get a picture of my bottom, but you do get one of the wound they allowed to develop by my stomach peg.
but not a drop to drink
Well sort of, and in the main they did but it still took time and miscommunication, even the latest technology pictured above didn’t help much.
As you know from the last update, I had a meeting with them in early April. It then went quiet until right at the end of June, despite multiple emails to them from my brother.
When they eventually replied we were unsurprised to learn that they had not talked to my former Social Worker, I don’t have one now because I am fully health funded, or talked to my Psychologist, both of whom had both offered to help them to put the case together for the funding panel.
Naturally instead of taking up the offered help, they proceeded on, on their own and had their first go sent back, with a request for more detail; that was when they asked us for more evidence in the traditional grids way they always do. My brother refused to complete them as inappropriate, instead he sent them a log of how often my catheter had blocked overnight each week for previous couple of months, which was roughly every other night. He also argued that my main outstanding psychological need now was when carers weren’t there so filling in grids when they were was pointless and he again suggested they talk to the Psychologist about this, by this time my ex-Social Worker had withdrawn her offer of help as I’d been off her caseload too long, I think that decision was fair.
They didn’t take up the offer this time either, no, but they rewrote their proposal without help, based on reports already received I guess. During this time extra monies occasionally appeared with no explanation, but the regular budget deposit seemed much the same, so we dared not increase the carers hours even though it was desirable to do so.
In the end we succeeded in almost getting what we were asking for, the aim was to get funding for carers from 7am in the morning to 10pm at night, that is funding for 105 care hours a week. Somehow, they eventually managed to arrange 102.9 hours a week.
The reality is that 7am would have been ideal, but now we can’t afford around half an hour at day, so a 7.30am start will have to do. Actually that is probably more convenient for the carers, but I have to try and be relaxed for an extra half an hour each morning.
You will notice I say that I will have to try and be relaxed for an half extra hour, this is because we have accepted the 102.9 hours, money agreed is better than money still in limbo or at risk of diminution.
As well as the new larger monthly payment we’ve also had the back payment related to the agreement, so the bank balance is looking healthier, its a pity we couldn’t have had the money earlier, but I wasn’t going to run the budget into red, which was the risk if we’d upped the shifts hours earlier, when we had no idea when the money would actually arrive, if it did at all.
I guess to sum up, it’s good news, that from next week I will have carers helping me from 7.30am to 10pm daily. In the end our system may be a bit long winded time-wise but its a lot better than having a private one for care and health, under either of which I would by now get no help outside family as any insurances would have run out long ago. Actually under such a system I would probably already be dead.
It is interesting to compare how different evaluations of my needs are conducted. Recently I have also been reassessed for disability benefits as part of the national policy of transferring people of Disability Living Allowance (DLA) and onto Personal Independence Payments (PIP), actually as a W in the alphabet I am towards the last to be reassessed.
The process wasn’t hugely quicker than the refunding process, and involved as much paperwork for my brother. The booklet that needed filling was about 30 pages long asking for medical, health and disability details; along with this we sent in 120 pages of evidence about me for them to consider.
They half took the evidence onboard. I say half took the evidence onboard because an assessor still had to come out to assess me on the say so of her managers, even though she queried the need in my case. I wonder if the managers a paid per visit? The lady came, apologised for having to do the assessment in person; she didn’t think she needed to do it in person, given the evidence already submitted.
Perhaps unsurprisingly I got assessed as qualifying for higher level PIP for both the mobility needs and care needs components, which means I was assessed at 12 points or more in each category. For the mobility component I was assessed at 24/24 points. For the Care component I was assessed at 64/84 points, if you take out Communication which was the only category assessed at 0 points, my care needs were 64/76. Looking at those numbers, I think it is now widely agreed I am quite severely disabled with high care needs.
To expedite the new PIP my claim, my brother acted as my power of attorney during it. What we didn’t realise when we decided this is that it would automatically stop automatic payments of certain other benefits. No money was lost just delayed. It just goes to prove nothing is ever straight forward.
I think this update proves that with the help of my on the ball family, on the ball carers and the NHS, you can’t keep this girl, well I’m no posh lady, down for long.
Sadly that has been the case for everyone, we recently heard that Pat from Upperthorpe Cafe passed away. I would like to dedicate this update to her memory and also to the Memory of Nora, the beautiful younger sister of my carer Claire.
Recently Carol, my carer, introduced me to the following song, which brings back to her the memory of her son, who passed a few years ago now. I’d like to dedicate its posting here to him.
I will continue to live to the best of my ability for all of them, and for all of you my friends.
In case you wondering about my book, well there’s a decision to be made there, to stop adding to it now or to add a couple more poems to it.
Just before I went into hospital the last time I was embarking on trying to do a poem about what each day is like for me as this would explain in more detail about my life to readers of my book. Since coming back out this last time I have found it slightly harder to keep the poems I start in my brain, and I keep forgetting to record them when they are there.
It may be partly motivation, I’m not really wanting to do the above poem at the moment, I’d prefer to do another one about Grandma but I’m struggling even with that at the moment. I may opt to not do the poems but instead put a description of my daily battles into the book.
I think that’s it for this update
Love to you all
4th November 2019
Ceiling Track Hoist
Sorry the photo is a bit white on white
Me and Olivia,
my newest carer.