Is it a Happy Anniversary?

​20 years ago today I had the Christmas gift no-one ever wants to get, a diagnosis of Multiple Sclerosis. I wished my consultant a Merry Christmas and walked out with no idea what this meant for the rest of my life. 

13 months earlier I’d ended up in hospital with very limited sensation from the chest down, and had spent the time from then up to this point adapting to my new normal. I went from being told in December of that first year that this was a one off and to go away and recover as much function as I could, to a second episode a couple of months later affecting my arms. They were a bit less certain from this point and later in the year started to talk about the possibility of MS, but only a possibility. Another episode down the line, a few more MRI’s and a lumbar puncture later and 13 months after the initial pins and needles in the soles of my feet it was official. 

Strangely by this point I’d come to terms with the fact it was probably going to be MS and getting a proper diagnosis was almost a relief. But my overwhelming instinct was to not think about it until Christmas was over with, as a Mum of a young daughter I just wanted her to enjoy the season. I’d gone to the appointment on my own too, and hadn’t really taken in much of what he’d said. So I packed it away firmly into a box labelled January’s problem  and just got on with the business of Christmas. 

Looking back now I’m not sure I ever really unpacked that ‘January’s problem’ box, I just got on with the business of getting on with it.  I’d obviously googled MS a lot in that year prior to diagnosis so had a lot of facts and information mulling around my head. One fact I remember seeing was something about numbers of people being in a wheelchair within 10 years of diagnosis, back then it was quite high as there weren’t the effective disease modifying treatments there are today. It’s the one thing that stuck in my head and I was determined not to be in that particular statistic! I’m happy to report that for the most part I’m not, largely due to my stubbornness.

So 20 years on, how do I feel about my MS? Well I’ve definitely reached an uneasy truce with it. We rub along together, falling out from time to time.  I try and learn what my limits are, but then it moves the goal posts again, so I just bumble along, overdoing things and worrying about it later mostly. 

MS has changed my life, there’s no doubting that, but not all of it is negative. Without MS I would not be doing a job I love, and certainly wouldn’t be on the verge of graduating from university. Many of the people I value most in my life (not all, but lots) have come into my life because of MS, and for these things I do have to be a bit grateful to the disease. I would say, on reflection, that it has probably brought me as many things as it has taken away from me. I won’t say I wouldn’t go back and not have MS, because obviously I’d love not to have it, but I’ve reached my peace with it, and all the wonderful friends, old and new, that I have because of the path it has put me on, have helped me to do this! So today I mark the anniversary of the strangest, most unwelcome, Christmas gift ever, MS has become part of me, but does not, and never will, define who I am, I have it, it does not have me!

20 years of Transverse Myelitis

20 years ago I got up one morning with pins and needles in the soles of both my feet! Little did I know this was the day that would change my life forever! 

I thought nothing of it and we went to Birmingham to do some Christmas shopping. When we got home it was still there and I put it down to the new boots I was wearing. The next morning it was still there, but I carried on and went to work. By lunch time it had spread up to my knees and when my meeting finished one of my lovely colleagues brought me home. 

It crept on and early evening when I went to the loo I realised I had very little feeling below my waist. Something wasn’t right so I called the GP and an appointment was made at the out of hours clinic for me a couple of hours later. I went in and was sent by ambulance straight to A&E, by this time I was struggling to walk and had reduced sensation up to my chest.

in A&E I was poked and prodded and all my obs were normal. I’d not had a fall, had no injury, so it must have been in my head? Well that’s how I was treated by some of the staff. A few different doctors came and went, the final one a Neurology registrar who told me I was going for an MRI scan shortly, but there was a bit of a wait as the radiographer lived an hour away. This rang the first alarm bell for me. If they were getting someone in and not waiting till the morning then it couldn’t be trivial? I asked the doc what she thought it could be, she rattled off a list of horrid things it could be, none of them trivial! I asked one more question, will I walk again? She coldly replied “I have no idea” and walked away! I was left at 2am, on my own, to sit with that. It was one of the most scary moments of my life!

I went to scan, that was a surreal experience at 3am, and then to the obs ward, where I spent all the next day waiting for news, shuffling around and being told nothing despite my plea’s. I was so happy to see Ian arrive after work. Then at about 6pm a lovely man arrived and introduced himself.

“Hello I’m Dr Allrogen and I know what’s wrong with you”!

Those words will forever stay with me, as will the brief sense of relief! He said I had something called Transverse Myelitis, from T2 down. This meant the whole of my spinal cord from the chest down was affected. He said I’d be going to the ward to be his guest for a couple of months and they’d be doing a lumbar puncture, but in meantime they needed to get me on some strong steroids. I did say I wouldn’t be there that long, and he smiled knowingly and said we’ll see…

I had my first IV of high dose steroids pretty much straight away, my first experience of that terrible taste in the mouth I have since become so familiar with. I went to the ward later that evening and despite having had virtually no sleep in well over 40 hours I was sat on the side of the bed, wide awake, chatting to a nurse at Midnight. Another of the joys of steroids I’ve come to be familiar with.

The next day I woke to see a couple of familiar faces on the ward. I’d worked on the ward a few years previously and it was lovely to see people I knew but very bizarre to be on the other side! This was lumbar puncture day! I don’t actually have any terrible memories of it, it wasn’t pleasant but I’d been given good advice of what to do, so I escaped the worst of the effects. I do however remember an old friend being on the ward, she’d been diagnosed with MS a few years before and was there for treatment, I was very glad to see her, we entertained each other for a couple of hours, little did I know this was to be my future too.

I woke every morning and my first act of the day was to feel my legs to see if any feeling had miraculously returned overnight. One of the staff I knew quite well caught me doing it one morning and found it hilarious, asked if I thought someone had stolen my legs in the night? 20 years later and I have never had that sensation return to my feet! On the upside though, my feet aren’t ticklish!

I played the game, took the steroids, did the physio, submitted to being examined by a long line of medical students. It’s a rare disease you see, so quite a treat for students to get to experience on placement! There are only around 300 cases a year in the whole of the UK! Even less that go on to develop MS, what a rare gem I turned out to be! Especially when I went on, years later, to get a second even rarer disease, what are the odds? I even took part in med student exams.

Every time Dr Allrogen visited I asked the same question, can I go home please? He started by telling me I would be there a long time yet. Then it was waiting for this thing or another to happen. His final move was setting me a test to pass, he clearly thought I had no chance, I needed to be able to do the stairs. When the physio walked past my bed later that day I said we were doing the stairs the next day. We did it! Sheer bloody mindedness, upper body strength and the longing for home got me through! So the following day when Dr Allrogen arrived I had my bags packed. He looked puzzled, my response: “you said I could go home when I could do the stairs, I did them yesterday.” He shrugged his shoulders and sent me off with an appointment to see him a few weeks later and the instruction to keep up my exercises and recover as much function as I could, that this was a one off that would never happen again!

I went home with a huge sense of relief, after two and a half weeks in hospital, a shiny new pair of crutches and the reassurance that the worst was over. Sadly less than 2 months later I’d be back in hospital…

Is this grief?

So its been well over a year since I last blogged, I've written dozens in my head, usually in bed at night when I'm struggling to sleep.  But none of them have ever made it to print.  Mostly because all of the clever stuff I think of is forgotten by the time I've had a few hours sleep.  I have decided I should make more of an effort to write it down, so here goes.

On my day off this week I mooched off to a town a little way from us, with my daughter, for a bit of shopping. While I was out that way I decided to pop out to my Dad's house to say hello.  It's about 18 months since I last saw him, I've seen very little of him over the last 20 odd years.  This has been largely of his doing, I've dropped in on him a few times and given him the option of more but to no avail.  The last time I went a little voice in my head told me to go, afterwards I told myself it was something I needed to do one last time so that when the time came I'd know I'd tried.

Well this week the time came.  That little voice in my head once again told me I needed to go, so we went.  As we drove up to the house I knew straight away, the car was gone and the house clearly not occupied.  I found myself in the bizarre position of being told by an old chap across the road that he'd passed away.  I smiled, thanked him and walked away trying to make it back to the car before the tears came.

I've cried a lot over the last 2 days.  I cried buckets yesterday, on the drive home and then on and off for the rest of the day and well into the night.  I started the day determined not to cry today, but didn't even make it past the journey in to work, crying for most of the journey.  I find myself in this really strange position where I don't feel I have the right to be upset, after all I've barely seen him in the last 20 years.  But I am upset.  I guess the rational part of me knew that nothing was going to change now but there was a small part of me that hoped, just maybe, that something might happen and I'd get a chance to get close to him again.  Well that will never happen now. 

So I find myself in this very bizarre space where I'm grieving, but I have none of the usual closure that you get.  No funeral to go to, that's already happened, no chance to say goodbye.  I just have to carry on as normal and deal with it all in the background.  But I am grieving, I just keep crying.  I have this strange numbness inside.  I remember a similar feeling when my Nan died 17 years ago, I worshipped her and losing her devastated me.  This can't be anything like that surely, I've barely seen him in two decades.  But there is this enormous ball of grief that I can't explain and I'm struggling to get my head around.  He was my Dad after all, and once upon a time I did have a relationship with him and I loved him.  I think I'm also grieving for the relationship I missed out on and that I can't have now and maybe that's just as hard to come to terms with.  I'm grieving for the childhood memories I don't have because he wasn't around.  My bank of memories of him is only a relatively small one in the scheme of things and that makes me sad too.

A small amount of detective work on social media led to me finding my half sisters profile and about an hour after sending her a message she replied.  To be fair to her she said she'd tried to find contact details to tell me but hadn't been able to.  So I at least know when he died now and what happened, I guess that makes it a little easier to come to terms with maybe?  I also know where his ashes will be scattered so can eventually go and say goodbye and have somewhere to visit occasionally for a bit of quiet reflection should I feel the need.  Even this felt strange though, I felt guilty for causing her upset, whilst at the same time I just needed to know.  This is my half sister, who I have quite a resemblance to, but have never met and corresponded with for the first time today.

It's been quite a surreal couple of days to say the least.  It seemed like such a normal Tuesday when I got up.  Just goes to show you never know what life has in store.........

Where did that bus come from?

I'm now 6 days post treatment.  When they tested my blood prior to the last dose the cells were virtually non existent already, so I'm fairly sure the last day of treatment finished off any that were left.  So begins the long hard task of growing a shiny new immune system.  Rather than thinking in terms of how many days post treatment I like to think of it as my new immune system being 6 days old. 

Any one who has been pregnant will vouch for the fact that growing a new human being from scratch is very tiring indeed.  Well I can confirm that growing a new immune system is very tiring too.  Making lots of those new blood cells in a hurry is exhausting, its also quite painful at times too.  Who knew?  When you make them at a normal rate you just don't even know its happening.  But when your bone marrow is on overtime it lets you know about it I can tell you.  It causes pain right inside your bones.  That's not to mention the headache from hell if you don't drink enough, and by enough think twice as much as usual!!

So I finally managed to escape from the hospital on Wednesday afternoon.  It was an interesting day.  Lots of conversations about blood sugars and what should be done, as they hadn't reached anywhere near the holy grail of the single figure target that had been set.  They still haven't.....

The decided to get the diabetes team to see me, so after seeing the MS nurse and the diabetes nurses the decision was made to start me on insulin.  Prescriptions were requested and I was eventually taken to the discharge lounge to wait to see the diabetes nurses again to learn all about what I would have to do.  She arrived with a bag full of leaflets, a sharps box, needles etc and proceeded to give me a whistle stop tour of how to use the insulin pens and how to inject myself.  My head was spinning by this time, I was exhausted and just needed a lie down.  But not yet, my lift arrived, I was handed 2 bags full of medication and released into the world. 

I was so glad to be home, in my own bed.  I'd had 3 hours sleep in the last 2 nights, and probably only about 10 hours in the whole time I was there.  I'm not quite sure how I'd kept going up to that point.  Steroids?  Adrenaline?

Whatever it was deserted me over night, and the next day I felt like I'd been hit by a bus!  Still do! Even the simplest thing like brushing my teeth leaves me needing a lie down to rest.  It's crazy.  I feel like I'll never feel normal again.  I will, I know that, it will just take some time, and a lot of water.  These shiny new cells had better be worth all the effort and behave themselves.

Thank you to everyone for all the support you have given me over the last few weeks, it means more than any of you will ever know.  It's like having my own little Lemmie Army!

Round 2 - Day 3

So it finally arrived R2D3, no where near as snappy a title as day 2, but potentially my last day of taking an MS disease modifying drug for a few years if all goes well. Wouldn’t that be pretty damn amazing if it were the case.  It’s not quite as liberating as it sounds as I’ll still have to attend for blood and urine tests every month for 4 more years, and I’ll still be on the alert for any of the random side effects this can cause even years down the line. But still no more of these dreadful drugs in my system for a bit will be a bonus once I’m out the other side.

After getting finished R2D2, having my late obs done and getting an extra shot of insulin for my trouble,  I had my nice pillow ready to go, only to discover my sheep had all legged it back to the hills and sleep wasn’t going to be happening for me much. I tried reading my Christmas mags, a spot of solitaire, but despite my best efforts was still sat on the side of my bed doing my puzzle book at 02:30 when Rob took pity on me and brought me another cuppa. I made a really concerted effort again at 03:30 and at a push managed just under 2 hours of car napping.  Today has been a long day! 

Had a visit from the MS nurse this morning to go through some of the discharge stuff.  It’s official, as I’m getting antibiotics for a month this year I only have to do the diet for two months. Yay for me, I’ll get off on 18th December just in time for all those Christmas goodies and Boxing Day buffet! This makes me such a happy lady!! There were lots of other things discussed, but this was my takeaway headline!!

Then I had a visit from the Consultant, two consultants actually and a few friends. This was more of a surprise and made me less happy. They weren’t happy with my blood sugars and said I had to stay tonight and see where they’re at in the morning, not unexpected to be fair. But the fact he wants them in single figures for discharge is less so. They haven’t been below 17 since the steroids started, tomorrow could be interesting. They changed the treatment regime a little, higher dose and lower treatment threshold. Fingers crossed.

I had a lovely long chat on the phone with my old boss, which was lovely. A visit from an old colleague from my St John days and a bit of a reminisce with him. Both very nice and helped pass the day till my evening visitors arrived with a nice large cuppa. 

The infusions themselves passed uneventfully in the end, a bit slow due to shortages in trained staff again, but no real issues to report, finished around 9:30 again. The blood sugar wasn’t quite so cooperative.  4 more lots of insulin throughout the day and still nothing really below even 20.  Eventually the infusion came down, I got ready for bed, had some more obs and blood sugar taken another 6 units given for good measure. watched a bit of TV, read, then settled down around 23:30, with my cannula out and my nice soft pillow, I was determined to sleep.  I think at some point I did drop off too, then the nurse came knocking to do my BM and obs about 1 pm, and another 6 units was given.  But you know, I’ve got this sleep thing going, it’s all good! Till she wakes me up at 01:45 to check it again. Still not below 20 and now I’m wide awake.  

I’m getting out of here tomorrow one way or another. Thankfully the lovely nurse is on and I’ve lobbied her already, she’s going to get the docs to work out a temporary management plan for me to go home under. Hopefully she’ll convince them. One of the doctors from this morning poked her head in too, and I lobbied her, so she was going to talk to her colleague that will be here tomorrow. Keep everything crossed. 

I’ve cooked up a plan of my own otherwise, I’m going to take a hostage, to use as a bargaining tool to negotiate early release. I’m thinking possibly the tea lady, I’ll have supplies to keep me doing during negotiations then, plus the rest of the ward will want her releasing quickly to get their cuppa so I’m guartanteed popular support? Look out for the local headlines later.......

Star Wars Day - R2D2

Happy Star Wars day aka R2D2! See told you there’d be a chance for jokes! 

Hope you’re impressed with the outfit, this was a present from my wonderful friends. Made a few people smile today too.

So just when I thought it was settling down last night my BP decided to drop fairly dramatically as my pulse rate rose.  My body having a last fight back at the drugs I think.  Looks like this was an infusion related reaction, maybe because the drug was given a bit too quickly. Anyway after a bit more insulin and a few more sets of obs I settled down for the night completely exhausted, and actually managed a few hours sleep! Probably more than I’d had the two nights before. 

Day two started off bright and early. The day staff came on but weren’t sure what was happening with my infusion, needing to wait till the doctors rounds. So I made a premptive strike and went in search of the MS nurse, to lobby her for it to go ahead. She came down and had a word, just needed the all clear from Dr S and we were good to go. Unfortunately due to the lack of IV trained staff it was pretty late by the time it went up. As it was all to go through slower today this meant being hooked up for 10 hours!! Literally not being free until 10pm. 

All in all today has been a much better day, even being secured to the spot for 10 hours! Not felt anywhere near as poorly as yesterday when I did feel very rough indeed! So I’ll take that. Nice normal obs today, apart from those pesky blood sugars....

I started the day on 17.4, so it was never going to be great let’s be honest? But I did learn a new skill today, I gave myself my first ever insulin injection, I actually gave myself 4 in the end, so I’m pretty much an old hand now. The upside being if they do send me home with some I’ll be able to manage it. Had my big girl pants on today! I do hope you’re all suitably impressed. 

I’m starting to think getting out of here tomorrow is looking less likely, I’m mentally preparing for an extra day, and early release will be a bonus. However I’m not prepared for any longer than this, so get your shovels ready to dig me out? Alternatively just kidnap me and bundle me into the lift, but don’t forget my pillow! 

I’ve had my nice soft comfy pillow brought in from home, I’m convinced this helped me sleep better last night. I do like my home comforts. The thing I’m missing most, apart from my bed, family, being able to come and go as I please and decent food, is probably a good old home made cuppa, or even a work made one. Have a few colleagues who make a pretty cracking one, Ju, Ryan and Karen spring to mind. Missing my old mate Rach and her tea too!! Oh my word, I’m missing work, it’s worse than I thought!! Start digging now.......

 

Lemtrada - Round 2, Day 1, the journey begins

Welcome to R2D1, save the jokes for tomorrow, I’ve prepped for it! Watch this space!

So as I said before, this year is inpatient treatment, they won’t have me on the day unit for safety reasons. Saw the MS nurse a few weeks ago and it was all systems go.  Bloods were all clear of the Nasties like HIV, hepatitis and TB, so let’s have this.  The plan was to bring me in on the Sunday afternoon (14th October) and start the treatment on the Monday.  I had a schedule sorted out, planned the weekend in military detail, then the phone rang at 13:30 on Saturday afternoon to ask me to come straight in as they had a side room available. So I finish packing my bag and off I go!

After arriving about 14:30 I was settled in and they did the paperwork. Didn’t see a doctor until about 9 that night, but I was told this was all fine, they just needed the bloods results for the Sunday morning and we were good to go!

Sunday morning came and went but sadly my blood results did not. Just when I was beginning to dispair that it wasn’t going to happen the loveliest doctor showed up with cannula in hand and got it in first time of trying! Things were looking up! The steroids started, they started to take effect and I got a bit bouncy, nothing too much, Tigger on a slow day. Then the taste started, who slipped battery acid in my tea?

Lemtrada was up next, and again I could feel the effects, started to feel very tired, headache started, and generally felt eurggghhhh (very highbrow medical term), but still things were going well. Lemtrada finished, and the last bag of fluids went up, which is when the wheels started getting wobbly. Temp started spiking, I was freezing, then shivering, then hot and sweaty, then clammy, and the temp hit 38.9 despite open windows, paracetamol, a fan and lots of cold fluids. I’ve had two docs come and have a poke and a prod and they’re none the wiser, so we watch and wait.

Then the blood sugar, not wanting to feel left out joined in. At 23.7 I had 4 units of insulin, playing the waiting game now.

The good news is day one is in the bag, well more specifically out of the bags and in my veins. I’m sure I can feel my lymphocytes dying already, but I might be imagining that, they might be fighting back and that’s what’s happening with the temp. Anyway it’s done and I can move around and go to the loo with ease again.

Tomorrow’s start will be delayed while they consult with the boss (the MS nurse) and possibly the consultant. I’m hoping the delay is in hours and not days, I’m not staying here! My sights are set on Tuesday, Wednesday at the latest. So any longer and I’ll be looking for a task force to dig me a tunnel?  Volunteers please apply below?

In the meantime I’m still smiling, have a row of Welsh Sheep lined up to count later and I’m desperately hoping for sleep to arrive. Despite asking two doctors, no sleeping pills are written up. Last night I couldn’t sleep but I stayed in bed and kept quiet, tonight I might be a bit more difficult if I can’t, they’ll be making sure I have them for tomorrow....