February 2016 was an horrific month for me. I lost my beloved mother on the 21st and then on the 24th I went to see my neurologist and he gave me the news I had been waiting to hear for so long, you have Primary Progressive MS. Too late to tell my mum what was wrong with me, even though we thought it was MS.
My neurologist and I had been together 10 years. My neurologist had always felt there was something like MS going on but was unable to give me a firm diagnoses as there was a protocol to go through called the McDonald Criteria.
I kept missing it by one point then on that day finally the last piece of the jigsaw had come together and he was able to give me a life changing diagnosis.
A label. I was numb anyway couldn’t feel much because I was grieving for my mother still in shock over her horrific passing. I almost hugged my neurologist because of my emotional state. Basically his parting words were to me, your strong Mrs Trim, if you need anything talk to your MS nurse, and keep your doctor in the loop. So far I have never seen him again.
MS Nurse. Ah the invisible helper. You can if your lucky get hold of the elusive MS nurse who sadly is so overworked they are rarer then hens teeth. We are blessed with two I believe for a large area a big city who has to cope with so many people. You ring them if your feel anxious about something. Firstly you have to be assigned one. I had been apparently; but typically I was lost in the system.
I felt deserted by the NHS. I was told my life is officially changed, you have a progressive disease go forth and deal with it. I felt like someone had plonked me on a desert island and i was just sat there watching my life fly by. It took a full year to finally be assigned an MS nurse it was my new doctor who pushed for it. I saw my MS nurse just before my husband died in October 2017.
Well that was an experience. Off I went on my appointment. Basically to be told very little. I had been coping with eye issues really bad. The MS nurse decided to check my eyes by using a colour screen chart they use for colour blindness. Now that was a hoot as he was colour blind himself, so my care worker at the time had to keep him informed of what the colour was. I did mention this before in one of my other blogs. They use these to see if you can see the number.
I gather that I failed the test and he told me that for the last few months my symptoms would indicate another attack of Optical Neuritis which had been totally missed by the GP. The only thing you can do for this is steroids but it was too late for me so I had to expect about a year of on and off symptoms, which well yes I actually did get lucky me.
Who knew a diagnosis of Primary Progressive Multiple Sclerosis would leave you feeling alone and frightened. I kind of knew what Robinson Crusoe had felt being stranded on an island waiting for help and it never ever seeming to arrive. Yes that was fiction mine is reality which makes it all the worse.
Finally another occasion to see the MS Nurse in 2018 I was told that an appointment would be scheduled for me to see my neurologist in March 2019 to discuss the new drug for PPMS sufferers.
Ocrevus (ocrelizumab) could be my saviour, help me to slow down the progression, so obviously it was HOPEfor me. Maybe finally I could get off this island and join the human race again. I waited for notice of a pending appointment nothing.
Then I read on a forum for MS sufferers the news………….
The NHS will not fund treatment with Roche’s recently-approved multiple sclerosis drug Ocrevus, even though it is the only treatment for the primary progressive form of the disease.
The final appraisal document from the National Institute for Health and Care Excellence (NICE) has caused consternation among patients – and an immediate petition from the MS Society – for Roche, NHS England and NICE to reach an agreement that will allow the drug to be covered for PPMS.
It was down to MONEYagain. It cost too much, never mind the cost of human suffering. We were to be denied a possible drug that could make our journey easier. Money we were not worthy of such a sacrifice. It made me so mad.
I believe that is why so far no appointment for the neurologist as he knows there is really nothing he can do for me.
So what now for me and hundreds of other sufferers of Primary Progressive MS. Do we just sit drifting along for years whiling away our days hoping for help to arrive? I feel like the lost. Its all down to money the price of life. Its available if its PAIDfor but costs thousands of pounds. It is thankfully available for people suffering with RRMS if they are in the early stages.
I know the chances of being accepted for this drug were pretty remote as it’s designed more for early stage PPMS but someone out there may have been a great candidate for it and benefit from this drug.
In the meantime I have done all I can to help myself. I have read everything I can about my illness whats good what is not, tried to stay positive.
Primary Progressive MS is really pretty much unknown about. Its one of those ADD on branches of a disease. Therefore not so much research done about it. I know more people now being diagnosed with it, so perhaps it is time the powers that be start to deal with it more. You cant just dump people on top of a scrap heap without at least trying to help them. 10 – 15,000 people in the UK are now being diagnosed with this disease. So basically 1 in 8 people will be waiting to be diagnosed.
Yes I feel deserted lost and alone. Thank goodness for friends and family is all I can say.
I know there is more research going on and hopefully in a few years people newly diagnosed will be helped more. Thankfully this disease can be slow to progress and even you can have a period of feeling better. Like it goes into idle mode.
I used to call this this stage the eye of the storm. I would say to my hubby the eye of the storm is here and I am smack bang in the middle as my illness has suddenly gone all calm, my legs have no spasms even, like for a few minutes a little longer if I am lucky all is calm at sea and I can see the light through the doom and gloom of my illness.
Then BLAM……….. havoc. Suddenly the disease will come out of its idle stage and goes nuts for a few days like it has to catch up on all the pain it has not given me.
Stupid disease, sometimes I would rather it just get on with it. I know silly to say but you just don’t know where you are with it. I haven’t had a truly calm moment for several years now, just more or less at the same level so I suppose in a way that is good.
After my husband died I did go down hill fast but in the last six months thankfully I feel with positivity and less stress I am on an even keel.
Right I am off; my island is calling me, I shall while away my days in quiet contemplation of life, and chill out listening to music and wait, and wait and who knows maybe one day a brown envelope with my name may come plopping on the mat and it will be from my neurologist to finally ask to see me………….
Who knows maybe there will be a letter today……
UPDATE. 19th July 2019. Finally the letter came and I saw my neurologist on Tuesday 16th July after THREE YEARS. It was a good appointment. He was very welcoming and sad to hear about my husband. Anyway he offered me a chance of Ocrevus but said it was a long road to find if i actually would be able to go on it, and yes my age was against me. I have all the stuff to read about it, but feel its too late for me, and I am not comfortable with the side effects, and the warning that if there is breast cancer in the family the chances of it are made much higher if i start this meds. It also stirs up your autoimmune system and leaves you more open to stuff like, flu, herpes, hepatitis, shingles the list is quite vast.
I am not sure that I want to take all these risks. I live in sheltered and a lot of people get sick in the winter here a lot of them being elderly so I am more open to catching something.
I have decided though if you want support you wont necessarily get it from the NHS. You need to join forums, start a blog, if you have MS join the Society and go for meetings (a bit like joining the AA lol), join on line groups and hope too your family will support you through this life changing disease. BUT remember that everyone has their own stuff to deal with and may not have time to help. Find a hobby, if your younger then get out with friends and have a life. MS is not going anywhere, so we might as well get on with our life as best we can.
So finally NICE have approved this medication for PPMS. I dont think I will be able to get it as my EDSS score is 7 not sure how long i have had it, but great news for those PPMSers who have just been diagnosed or recently diagnosed as its a start. A start a hope to get better. I am so relieved for all my friends with this disease.
Good company in a journey makes the way seem shorter. — Izaak Walton
Brazil 2000 – July
To say I was excited would be an understatement. I never in a million years thought we would have the money to afford a holiday in Brazil as the rates were really expensive. It was one place i have always wanted to visit, and believe me I have been all around the world at sometime in my life.
To be honest the thought of seeing a few hunky maybe footballer types running around on the beaches wouldn’t go amiss either….but i would never tell my hubby that.
I had gone to my local travel agents and there in the window was NEW THIS SEASON holiday in Recife Brazil on a “package” holiday. I couldn’t believe my eyes. There was the perfect holiday for Mike and I it was in a small Hotel in Recife the name of it now escapes my memory. It was so cheap and we could afford it. The Hotel was located close to the town and the beach was yards away. I booked it without hesitation for July 2000.
Mike my hubby was excited as I was even though he was well travelled himself. Finally the day came to leave and we got there after a long flight and journey but the Hotel was fine, had a swimming pool and beach was amazing like the beach on the old Bounty chocolate adverts. We soon found our bearings and hired a beach buggy fabulous so much fun. The beaches were virtually deserted as the PACKAGE holiday had only just started and we only saw a few other holiday makers, it was all just a trial anyway to see how it went down with the British customers. Well we were hooked and even talking about returning again the next year.
We had a great time really was fun, the weather was a bit unsettled though but still we enjoyed beach-combing, watching beach football, swimming, and just chilling and oh yes eating the local food which was brilliant just what we liked. We ate in the Brazilian restaurants and met lots of new people and just whiled away our days chatting and sightseeing as well.
Towards the end of the holiday we took a visit again to the town and decided to mooch the shops for presents to take home. I was in one when suddenly I had no vision in my left eye it was scary and bizarre. I remember clutching hold of Mikes arm and almost in tears was telling him “I cant see, I cant see, out of my left eye, get me out of here quickly”. He was shocked but didn’t argue and took me outside. I just held onto him as hard as i could so frightened i was going to die there and then in a strange place without my family. He calmed me down and i managed to open my eye again and the vision was weird i couldn’t see to the side at all, and it was so blurry and fuzzy. We took the quickest route back to the buggy and mike got me back to Hotel. By then my vision was slowly returning. He spoke to the receptionist and she got the local doctor out to see me.
He was a very nice kind man and made me feel comfortable and safe again. He checked me thoroughly and said in good English i hadn’t had a stroke but i must see my doctor as soon as i went back to the UK. He said i should be ok to stay for the next few days of my holiday but should rest for a day or two.
When he went i just wanted to go home, i was so scared and frightened, Mike got hold of the representative of the holiday company. He explained by the time it took to organise me a flight i would be going home anyway, and it would be just as easy if I just stayed there and finished the rest of my holiday.
In the morning things were almost back to normal my eyes felt better and my left wasn’t as painful or blurry.
So we spent the next few days just enjoying the rest of our holiday and time together.
Thankfully I managed to survive the homeward bound journey.
When I arrived home; the next day i popped round to see my daughter with her presents, and to tell her all about my holiday and the scary happenings to me I had. Whilst she was in the kitchen making a cup of coffee for me, well it happened again. My left eye went blind, like a black spot in the middle of the eye, all blurry and out of focus and the pain when i moved it.
My daughter insisted i went to the doctor so an appointment was made for the next day.
I went there and explained what happened. The doctor almost looked bored as I described the symptoms and finally just looked at me and said I expect it was the travelling, the heat and anxiety, I wouldn’t worry too much as it resolved itself the first time, and as you have just said to me, it feels better that day. He didn’t even bother to check my eyes.
I left that office feeling totally deflated how can someone potentially go blind TWICE, and yet not even have tests?
I was back at work the next day, and slowly the memories of my scary episodes started to fade until the next episode a few years later…………
“Was I losing my Sanity”?
Life after Brazil settled back down to the usual routine of rushing around in my job. I had a wonderful job i was an Educational Developer for a small college in our city. I was responsible to create and support accredited I.T. programs and also recreational classes throughout the 11 learning satellite centres which were attached to the college.
I was responsible for 54 tutors as well. On top of all that i taught I.T. and also basic cooking in the community.
I never stopped probably worked 60 hours. I was so proud the day i went for the interview as i was working for another college closer by in their flexible learning centre supporting members of the public in I.T. based learning. I loved the job but it wasnt challenging enough for me. I LOVED to be challenged. Maybe it was the Leo in me, or i took after my father who was just the same.
The interview consisted of a 2 hour interview the first was an hour on power point on how i would develop the necessary accredited programmes and deal with the quality, training, and variety of courses to present to the local community. By the time i had finished i was totally drained and whacked out. I was told I would hear back in a few day, and started to drive home.
I had to suddenly stop the car as i felt so ill i thought i was going to pass out. My eyes were so blurry i couldn’t see. I took long sips of cold water and just tried to chill back down. I just thought it was the stress i had just been through. Finally i was able to carry on with my journey home. I must admit i didn’t take much notice of the journey home i was just thinking about what i had just been through. It was like torture, jeez they wanted to know everything. I was up against a panel of people all firing shots at me about my “VISION” for their new programs in the community.
A few days later I received a thick envelope and it was a job offer, i was so excited i squealed like a stuck pig when i read it and Mike my hubby came running out thinking i had hurt myself. The money was good too and it would really help us.
I put my notice in that day I was working in a local colleges Flexible Learning suite (supporting learners in I.T.) and started to research on the Internet about all the I.T. programmes which i worked with now anyway but i had never had to actually deal with the qualification side of the courses. It was going to be a long hard road for me but i was so excited to have such a challenge.
Eventually I started my job, i had a PA, Dylis who had been working with me several years came with me, sadly she died a few years ago and is sadly missed.
Things started to go wrong in 2001 well i had been getting subtle little life disturbances before that but i had just ignored them. When I started my new job things i had noticed a little bit prior started to really show up.
I mean how come every single day when i went into the city office I would enter the office and immediately drift to the right and bang my arm or leg on the row of filing cabinets? It was madness i was getting black and blue, and the girls in my office started to tease me about being a secret drinker. Hardly yes i liked a glass of the old vino at night to relax but i would never drink for my breakfast lol I wasn’t that desperate.
Then Dily’s would find me ASLEEP on my desk about 3pm i just couldn’t stay awake, omg meetings were such a chore for me, as they got warmer i got more exhausted.
Oh dear then the invisible “Genie” only i could feel turned up. He would sit on my chest and viciously stab my body with a knife i had no idea where the pain would be at any given time, it would just suddenly hit me and i would shout out at times in shock. Dily’s would look at me old fashioned “you alright zen”, no I had that stupid pain again its bizarre. Was i losing my mind?
The days turned into weeks, then months and a few years on with me still experiencing all kinds of weird stuff had settled down into a routine and things were going good. I had all the I.T. qualifications in place, managed to sail through an ECDL audit with full marks, had written a full workable procedure for my tutors, had put together copious amounts of exercise books all on Microsoft suite, taken qualifications myself, taught cooking to recovering addicts and even had time to become an NVQ assessor just so we could offer Teacher Assistant and Administration NVQ to the local community.
To say my life was on full sail would be an understatement.
2004 the eyes hit me again, massive urinary infection and a period in my life when i could barely function, but i did. My GP once again put it all down to stress, and high blood pressure.
Then the next stage of my madness turned up. The proverbial dropping things. There i would be with car keys in hand then they would be on the floor. UGH every day i would drop something. What the hell was going on. I was an avid car boot Queen. I loved collecting and my second passion apart from my job was collecting and learning about antiques. I had a bedroom full of stuff. I would research and then if i thought they would sell they would go on Ebay. I sold a lot of stuff and prided myself of my collection of stuff and my quirky likeness for all things odd.
I had a little studio with a sheet over a table where i would lovingly arrange my latest piece i had found. Suddenly without warning that lovely piece i had treasured would be just on the floor in well more pieces then it started with. After i had massacred a few nice items I said to Mike that’s it someone else will have to photograph for me. I was so upset what was happening to me I didn’t even know i had let go of the item until i heard it smash.
It was madness.
The tiredness crept back in, and then the balance issues came back and I was constantly banging myself i was literally black and blue at one point and Dily’s commented one day jeez you look like your being beaten or something. I assured her i was not, well she knew that anyway mike being a friend.
Then the pins and needles arrived so bad in my legs i found myself struggling to drive thank god i had an automatic i thought to myself. I think Mike was beginning to think i was going nuts too…….pins and needles in my legs yet i could feel them, how weird was that, maybe i needed a new mattress.
It got so bad i had to ring Dily’s up and ask her to take me to work.
Every meeting was a challenge as i got so hot and felt sick and couldnt even focus on the contents.
Life just got weirder and weirder and more odd things would pop up and I really thought i was loosing my mind. I mean you should be able to have a bath right without getting stuck in it, and i mean that in a way that no i wasn’t so fat i couldn’t get out, the heat of the bath just sucked the life out of me.
Poor Mike my hubby tried to get me out on one occasion when my legs refused to work, and he went flying backwards as he wasn’t very strong himself suffering with his COPD. It was hopeless i was sat there scared and more scared. I suddenly thought well maybe its the heat of the water, so i pulled the plug and let the water drain out……………………. it took about 10 minutes laying in that bath for me to feel able to attempt getting out of the bath again, so this time with Mikes help i was successful and just flopped on my bed and lay there for ages, just like a balloon and been burst or a tyre let down and deflated, i had no energy whatsoever.
I realised that my days in the bath were over. Not only for my safety but Mikes too i didn’t want him hurting himself trying to extricate me from the bath. So we had a shower installed. Oh dear well errr that was a fairly good idea, but then when i was having a shower i had areas on my body which I literally couldn’t feel the water hitting the skin, I mean what was all that about?
I started to convince myself i was loosing my mind.
(Since then my illness progressed so much that even a shower was a real chore and i hate them even more so now they wipe me out all day, sometimes two.)
Until 2006 my life was ok sort of, but the mystery of my illness continued and there was always a new challenge for me to face.
We had booked a holiday for Malta in 2006 with my sister and her husband and we were really looking forward to it. I thought as did Mike perhaps getting away would do me good as i had been working non stop sometimes 60 to 70 hours a week, what with the teaching and qualification developing, keeping teachers in work, and making sure all the paperwork was done correctly and still writing exercise sheets and books, and lesson plans and checking my tutors too; really took it out off me.
Just before we were to travel the worse urinary tract infection hit me. Two weeks of antibiotics would not shift it, and I felt awful too, really tired and in pain for the first time especially in my back. I couldn’t get rid of this infection and it got closer to the holiday my doctor advised me not to travel, as my medical insurance would be invalid if anything to do with that happened. Sadly, we decided not to go ahead it was a hard decision to make, but because my doctor had supported me with this i was able to get my money back thank goodness, but it was sad as i was looking forward to the holiday with my sister they still went and enjoyed it.
I still know the exact day and date that my life changed for ever. It was the 11th September 2006 a Monday.
On the Friday our college had a big award ceremony for all the students who had done well. I wasn’t feeling special i had been suffering more with really bad backache and the heat was wiping me out, we were having a late summer. I went to the ceremony but have to say I was glad when it was over and I could go home to rest.
Every weekend I would usually go to a local car boot sale, they were my joy and relaxation. I would buy lots of things usually as i was a collector and I sold stuff on Ebay. It really helped me to wind down. There was the usual one not far about 10 minutes away by car.
Mike took me and parked up. I was still aching in my back but was determined to have a walk around. It didn’t take very long for me to realise something wasn’t quite right. My legs were so stiff i could barely move them one foot in front of the other. It was almost like walking with concrete boots on. I tried to enjoy myself, but stiff legs, and cramp in the back of the shins was starting to take a toll. I found Mike and told him i needed to go home. He knew there must be something wrong for me to do that, i had never done it before even in the freezing winter.
I got home and just had to go to bed and lay down. I cold barely move and my left foot i remember was almost dead. I stayed there and eventually after Mike ensuring i had some food for the evening i fell asleep.
When i woke up in the morning my legs were so stiff and in pain I could barely move. I nudged mike awake and told him he would have to help me get out of bed. I just couldn’t even swing my legs out of the bed, they were dead weights.
I remember trying to stand up and nearly falling over. Eventually Mike managed to get me to the bathroom but it was a real struggle.
There was no way i was going to be able to get to work in this state. Mike rang Dily’s and explained, then he rang the doctor, who eventually came to see me around lunchtime. This was a new practice as i had left the old one. She did some quick tests and told me she thought there was something neurological going on, and would make a referral to a neurologist and i was best to just rest for now, and come and see her when I felt a bit better as a referral in those days would take several weeks.
Mid week I felt a little better and went to see her. She did more neurological tests and confirmed she was on the right track. As I wanted to go back to work as soon as I could I agreed to see the neurologist privately.
That was the second part of my journey was I going insane or was I really sick…….it took 10 long years to find out the answer to that question…………………………………………….
Testing testing 1,2,3…
Getting a diagnosis of whatever it was that was ailing me was not going to be an easy thing. I realised that after my first visit to the neurologist. Because I wanted an urgent answer i even went private for the first MRI. I just wanted to go back to work.
My first meeting with him was positive. He let me ramble on about things that had gone on. Then I was asked to lay on the bed and he started a barrage of tests jeez it was like being in a torture chamber, I mean what did i do to deserve having long sharp pins sticking into my legs……………………..
You would think OUCH would be the first thing out of my mouth nope. He started on my left leg knee down to foot and under foot. I just lay there wondering what on earth he was doing come on for gods sake get on with it. He kind of looked at me from under his arm and said can’t you feel this? “Feel what I said”? I should have been ouching and snatching back my leg but it just lay prone. However, when he went to stick it on the other leg and asked me SHARP or DULL i shamefully have to say i nearly kicked him hard boy I felt that. Flipping heck ouch and double ouch.
The next thing to be revealed to me was a TUNING FORK…. I looked at it thinking out wow what is he going to do with that give me a TUNE UP ba boom lol.
Basically he tapped the fork onto the edge of the bed and said prior to that please let me know if you feel the vibrations… Well left leg from knee down and foot, toes and ankle NOTHING much on my foot and ankle zero. Right foot i could feel the vibrations.
So then we did other tests i believe to test my gait, and one where i had to stand with my eyes closed and I nearly fell over. I still cant do that. The tests seemed to last an eternity. (See illustration below I had them all and a few added)
He told me i needed further testing as i had left sided weakness and other issues going on. So we agreed an MRI of the brain, which i paid for at The Cobalt Centre in Cheltenham surprisingly not massively expensive and got seen very quickly no waiting when you pay private you get seen in a few days not weeks or months.
The results of that were some degeneration top of spine some SWEDISH NODES, but also large patch of high signal foci in the deep white matter of my brain………..WOW sounds good right…………. WRONG.
The radiologist had simply seen the date of my birth 1951 and put it down to more LIKELY my age and not a demyelinating disease.
Now folks this is the truth i had no idea what was wrong with me even from the bizarre weirdness and i had deliberately kept away from Dr Google, but i did ask my Neurologist what was he looking for when i saw him for the results. He said then MS. He also told me quite honestly it could take a long time to finally get a diagnosis as certain criteria had to be met.
One thing I can say in the defence of my neurologist it was one of the times he was actually honest with me when he said those immortal words……….it could take a long time to get a diagnosis…..jeez literally did I know how right he was.
Ok fair enough I would see him again after the New Year I cant remember the dates, but there is a reason for that.
I got through Christmas I think ok. Mike then in the New Year had to make a trip to China and would be gone about 2 weeks. I know I shouldn’t say this but I found his trips away BLISS, because they gave me time to recharge my batteries and chill down a bit. Yes of course I missed him but sometimes a break is good especially as i was a miserable old bag with all this stuff going on, i think even Mike needed a break from me to be honest.
Well i was bored, not allowed to work as i was signed off. There is only so much you can do in a day and i found the simplest things would wipe me out soon it became obvious i wasn’t going to be bored not for a long time anyway……..
Ground Hog day……..it really exists……..
I am sure it was the 17/18th January this date seems fixed in my mind so we will go with either one for the sake of argument. I remember my daughter Miranda rang me to tell me not to PANIC….she had a car accident coming out of the road from the riding school she worked at…..whenever anyone says don’t PANIC well hell you do. She was ok, just bashed about phew but shook up and resting, her husband Greg was looking after my grandson.
I woke up the next morning so we will go for the 18th early. I got up stiff as usual and crampy legs. Looked in the mirror and thought hell girl you look old. I used to dye my hair which had gone prematurely grey regularly but since my illness had not bothered. My hair was a mess so I decided Mirror Mirror on the wall, Zenda sure as hell was not the fairest of them all, so went off downstairs carefully to get my scissors, i was going to trim my fringe. I remember coming back up getting my dye ready as i was going to cover that grey, and giving the hair a snip I can even remember chucking the hair into the loo. I kind of remember a little bit of rinsing but i am not sure about that one.
Next thing I remember is sitting on my settee fully dressed and my hair done talking to my daughter and it was my time to FREAKher out…………………………………………..
Groundhog day came to me that morning in the form of an episode of what the doctor called Transient Global Amnesia. Sounds posh doesn’t it like my memory had suddenly gone off globetrotting lol.
My daughter tells me (as i cant remember most of the times I rang her up), I kept ringing her up and asking where my husband was I couldn’t find him anywhere. She would tell me he was in China then i would repeat myself over and over again just like a scene in Groundhog day, until i would suddenly put the phone down. She said I rang 4 times saying the same thing, in between my daughter freaking out she managed to get hold of her sister and begged her to come to my house to see what was going on, as the accident she had the day before had rendered her immobile.
Well oh dear all i remember is suddenly sitting on the settee talking to her i suppose on the fifth call and my global wondering memory was coming back to me. I felt weird i can tell you the feeling was horrible like you were so drunk you just couldn’t remember what you had said. She told me to sit tight her sister was on her way to me. Now weirdly enough I must have remembered my daughters phone number to ring her i never really worked out why.
Slowly it was like coming out of a fog and I started to remember where I was and who I was like awakening from a long sleep maybe i was in a production of Sleeping Beauty but some how the Beauty doesn’t quite fit my profile.
The door bell rang and i got up to answer it, and there was my older daughter looking at me very anxiously. “Mum are you ok what is going on?” I think i just repeated what I knew. She quickly took charge and before i knew it, I was sitting in the doctors office in front of my doctor explaining what I think had happened. He checked me over, I had a slight temperature and a normal blood pressure, he said he didn’t think it was a stroke but classic of what they call an episode of TGA and my memory would slowly come back but i would never remember what i had actually done in the approximately 2 hours I was blacked out. Golly it was scary. He explained it was quite rare and even more rare to have another episode of it……………….errrrrrr well he got that one wrong.
See below with caption.
This is me in 2015 after another big episode of the rare TGA. Trust me to prove my doctor wrong. I don’t remember any of that day and ended up in hospital.
Well I spent about two weeks trying to get over my rather scary and bizarre episode of TGA. My husband had been contacted and was brought home early as the doctor didnt want me left on my own. I slowly recovered but never got my memory back. I do know when my daughter bought me home she went upstairs to check the bathroom, and the place was spotless. I had dyed my hair and put all the empty boxes and rubbish in the bin, the towels were in the washing machine, my bed had been made and my bedroom tidied up.
Of course I had to research this phenomenon and it could have been triggered either by my daughters accident or actually hanging curtains as the day before I had hung one set up.
As the days turned into weeks and then months i felt better about it, but still could not remember much of that day.
But lots of weird things were afoot I was convinced at one point my father who had died in 1997 was haunting me as so many odd things were happening but that’s all another story for another day…………all I know is the doctor I saw that day who said it was rare to have another episode got it wrong completely trust me to be different…………….
Rare ……. that’s a laugh
If you have been following me the last blog explained my attack of TGA, and the doctor assuring me it was rare and he doubted I would ever have another attack.
Can’t remember what year or what day, but I was still driving even though I struggled to walk and my mobility was compromised I had gone into my town which is about a three minute drive away. I came out of the supermarket and stood there like a blank lemon where was my car? I always parked it in the same place or close to the shop.
I did panic I found my illness made me panic more now so I rang my daughter I was crying I mean really. “I cant find my car someone has stolen it”, I was convinced. She calmed me down and came straight to me and parked up. “Come on mum” are you sure you didn’t go anywhere else. I assured her I hadn’t. Quick thinking she got my handbag and had a look inside. There was my building society book and clearly inside was a deposit I had made that exact day. Well the Building Society is a few minutes walk from the supermarket.
I had a blank look on my face so she made me stay in her car and went off to have a look around the car parks. She came back about 10 minutes later. “Mum I found your car it was parked outside the post office with your disabled badge displayed. Well I had no memory whatsoever of going there I still don’t.
I started to have odd things happening to me where i would have no memory of doing something but it would only last a few minutes. It was kind of scary, and I found myself writing down such things as I HAVE FED THE CATS or DOGS, I had to constantly remind myself as the animals were getting fatter and fatter. I was also over feeding the fish as i had no memory of feeding them at times.
I started having weird hallucinations with regards smell, it would be onions, or burning, I spent many a day walking around the house scared that I was going to have a fire.
My husband was concerned as he was away a lot but i had a care worker by then who kept me safe.
I have since found about MS and BRAIN FOG…..was I actually suffering from this or was it something else?
I always thought that brain fog in MS was more cognitive issues bit like getting old, cant remember a word or going into a room and not remembering why you went there in the first place. I mean I get all of that anyway. Also like the image I can read a sentence and just not be able to comprehend it at all. I cant concentrate on things for long so tend to flit from one thing to the next. Also my typing deteriorated I would write things and read them back and find words in there which had no meaning to the actually subject whatsoever. I spent ages checking over my work, my spelling well its really not good now and thank goodness for spell check. To me that is brain fog well my version.
What I seemed to be suffering with was more total memory loss. I would for example give someone one of my chickens, and they would comment on it one day, and I would blankly look at them as i had no memory of even talking to them, never mind giving them one of my beloved birds.
I found myself repeating things all the time, I would totally forget what I had said to someone and even that I had said it. This was ongoing and got tiresome but well you just put up with these things don’t you. Until the day you end up kind of waking up in hospital with a blank expression on your face.
It was 2015 I believe October. I had gotten up as normal early Mike and I had hatched chicks and they were about 4 weeks old, so I had to attend them, clean them out and make sure they had fresh water and food. They were so darn cute. I remember doing some of that, then vaguely remember saying to Mike “I feel sick and my stomach felt weird I need to go and sit down”. That was it.
Just imagine for one minute not being able to make any new memory whilst you were having an “episode”of whatever it was…..no memory you just sit there like normal hell you even look normal (well as normal as possible), but you are just repeating yourself over and over again, as you don’t remember saying anything…..yep we are back to the old ground hog again………….reliving the same thing over and over again.
I just suddenly and slowly remember looking to the right of me in a hospital bed, as yes I woke up in hospital its like waking up I suppose and realising your surroundings. My daughter was sitting there my eldest you could see how worried she was. She explained what happened, then Mike came in. He had to call an ambulance as i was just sat on the settee complaining of feeling weird and sick and repeating myself over and over again. I have no memory of the ambulance ride, or the ambulance men, or the doctor who saw me when i got there.
I was moved upstairs to the neurological ward, and slowly my memory BEFOREthe attack started to come back. I still have no memory of the hospital. I do remember the next day talking to a very dishy neurologist who after taking my medical history decided i was suffering with Transient Epileptic Amnesia which is quite rare, yeh trust me; way too greedy by halves, not only did I finally get told in 2016 I had progressive MS but in 2015 I was given a cup of TEA…..get it……and I HATE TEA bleurgh never drink it so that’s another joke the Joker has played on me, give me the one thing i really cant stomach…….
T.E.A. = TRANSIENT EPILEPTIC AMNESIA
I take a special tablet every night to ward off other attacks, but I have to say I do suffer with some weird things but then I wonder if they are down to MS brain fog, so much stuff we get is kind of similar and you never know where one thing starts and another finishes.
Sadly this disease has robbed me of some of my autobiography and I lost quite a bit of stuff from my child hood and later, although there is no rhyme or reason to what has disappeared from my brain, and actually lately I have suddenly had flash backs of things I thought I had forgotten.
I don’t think anyone can really understand how scary the episodes have been its left me anxious I know that, and I wont go out on my own unless it is just to pop my dog over the road to our local park just in case I have another attack. 2015 October was a bad month, but November 2015 until the 21st February 2016 was even worse then I could have ever imagined……………………………………
Just when you thought your life was stabilising……….fate kicks you in the stomach….and the EYES have it.
Well where was I? Oh yes 2015 was a very weird year for me and even now I find it difficult to recall stuff after my visit to hospital in a blank wiped out memory state.
I saw a different neurologist in the hospital who diagnosed me with TEA but he told me I needed to see my own neurologist urgently so whilst I was in there they made me an appointment I told them to do it privately as I would see him very quickly.
I had an appointment within a few days.
I saw my neurologist who had my notes and he agreed with the findings as we had been together for 10 years and obviously I had been telling him over that time of all the weird stuff I was experiencing. Also I told him my eyes were playing me up again so whilst I was there he proceeded to test them with cards they use to test for colourblindness. If you have Optical neuritis it can dull your colour perception, I didn’t know that until it was all explained to me. Ishihara Color Test I believe it is called. You get presented with these cards and have to say what number you can see.
Well I failed somewhat I have no idea why, but my neurologist booked me for another Visual evoked response test, VEP for short. If you have never had one of these don’t be frightenedby it as really its nothing to worry about honestly. You just sit down and have wires attached to your head with small patches. The wires record your brain’s responses as you watch a screen that displays an alternating checkerboard pattern.
The test measures the speed at which your optic nerve sends signals to your brain. If it’s damaged, they’ll move more slowly. A piece of cake the worse thing about having them done is the stuff they use to attach the patches to your head its sticky and hard to get off.
Nothing to worry about if your a Motorsport enthusiast its like watching the chequer flag go down for another win for Lewis Hamilton on the Grand Prix.
It doesn’t take long and there are no after affects just matted hair. Now I have to go back again in time sorry folks…..but I had already had one of these in 2008 I think it was. You see from 2007 until 2015 I like you my readers will have been through a barrage of tortuous testing. Some of you will have been lucky in some respects as your tests would have given a clear cut diagnosis of this insidious disease.
However a lot of us poor mortals would end up back and forth being forced into tiny spaces for our MRI, sitting in front of the chequer flat, having a large needle in our back, and more MRI with dye as well (don’t forget the dye) but i don’t want to dwell too much on them as I will write about the tests I went through and the results I had, but yes I had this VEP test before.
The results were wait for it………………..Slowing of the brain bilaterally. The test measured the speed at which my optic nerve was sending signals to my brain and as it was damaged they were moving more slowly. Which indicated I had a bout of Optical Neuritis. When was that, I cant see it would have been in 2000 as Optical Neuritis usually mends itself, so it could have been anytime between then and 2007. Who knows.
So no more answers for me, just more tests. I was put on the tablets for my TEA and my neurologist assured me taking them I would never have another attack, and he sent for an urgent VEP to be performed.
Woopee lucky me. I had that done very quickly which was surprise as I actually didn’t pay for it I was done on the NHS, I believe it was end of November something like that. I just had to wait for the familiar white envelope with the NHS mark on the back to get the results which never came until about end of January 2016.
As you guys reading this know we spend most of our time either waiting for an appointment, OR being put in queue for our tests, then yes waiting and waiting for the results. no wonder a lot of us have high blood pressure.
Life continued after the test in November and I went to my sisters birthday party on the 17th December. It was held in a small cafe about a 30 minute drive away from me, and my care worker took me there. All my family were there including my mum, and all my other brothers and sisters. We are a large family as mum was Italian and there were six of us. The only person missing was my eldest brother who was living in Australia, sadly I would meet him way too soon.
The cafe was like a hot house yes you know what I am going to say, heat and MS do not mix do they. I was struggling to eat my egg and spinach on gluten free bread, when suddenly the vision issues really appeared with a vengeance, they were so bad i could barely see out of my left eye I knew the signs, and sadly had to get out of there. Heat exacerbation is a bitch isn’t it? Sadly I had to split as I felt ill and needed to go home and rest.
Oh the joys of Utoffs syndrome. Hands up all of you who suffer from it? I think for me it is one of the worse symptoms as it can come in many guises.
I will leave my story here for now as what happens after my test is still painful for me but I promise you I will continue my story in a few days.
I will leave you with a laugh for now as it was December I thought this would give you a chuckle. I will be back in a few days.
Following on from my sisters birthday party…………………..
After I had the issue with the heat induced attack of Optical Neuritis at my sisters birthday party, it was only a few more days for Christmas. Just slightly over a week. I cant for the life of me think what we did that Christmas I am sure Mike and I just wanted a quiet one but knowing my family I expect we had a few more for lunch.
What has happened over the last few years has taken away some of my memory sadly, and it is hard to recall events, BUT I remember what happened on Christmas day 2015 not because it was a happy holiday, because the events that enfolded would change Christmas for ever for myself and I believe my family. The main player of this event was sadly my beloved mother.
Mum was going to my older sisters house for Christmas.
Mum had rung my brother up to tell him she couldnt get down the stairs and was in pain in her hip, as he only lived five minutes away he and his wife went straight away to help her. In the meantime they had already told my sister what was happening.
I am not going to dwell on the events that slowly unfolded as I still find it all incredibly difficult, and sadly after weeks of pain we lost mum on the 21st February. To say I was in emotional pain is an understatement. I have still not gotten over her loss, maybe I will write about it one day on another blog but this is my blog about my MS Journey. Yes these events had an impact on my health as any form of stress will trigger off pseudo flares and exacerbation’s.
The kicker for me was just after my mothers death, I finally had an appointment with my neurologist. A letter had plopped onto the door mat and it was from him inviting me to make an appointment as the results of my last VEP test back in November were positive once again for slowing of the brain………………………..Oh the irony of it, the results came to me by snail mail obviously and if only the results had come before I lost mum, I could have finally told her what was ailing me all those years. I could have finally told her, that the times I wanted to come and see her but had to cancel last minute was because I had Progressive Multiple Sclerosis which was slowly bit by bit eroding my life and abilities, much like one of those cliff edges that slowly crumble over time and you end up splat in the sea.
Like the house about to fall over the cliff edge; having PPMS eventually I too will eventually tip over the edge. Mine is slowly tipping over in the form of my disability. Since my mothers death and another horrendous event which I will talk about soon, my health has eroded so it is now precariously hanging……I am trying hard to stop it because I have the strength and genes of two wonderful people who made me strong my mum and dad.
I could have told her “mum I wanted to see you but my MS is playing up”. Not going to see her when I had arranged it, always made me feel bad about myself and frustrated to hell as I just didn’t understand why. I do now sadly.
Life after mums death was hard; my MS had gone into a tail spin, I had lost interest in life I just couldn’t get out of the depression that was surrounding me like a black cloak. I hated feeling this way. I don’t know how I got through my mums funeral but I did, and I managed to respect and repay all the love she had shown me over the years by talking at her funeral even though I was supported by my daughters trying to keep me upright, I managed from deep inside of me to quote a wonderful poem…...you can read it here.
If you want to know more about my mum you can read the tribute I wrote for her here.
(The tribute is in a form of a tri-fold sorry it was the way I handed it out at the funeral.)
Because of the nature of her death, I had a job to do which helped me grieve and get through these dark days, my job was to make sure that no other over 90 year would be treated as badly as my mother was that fateful Christmas day 2015. I put together a case of complaint with the help of my sister, and eventually the surgery where my mother attended was taken to task over her unnecessary and untimely and painful death. She would have been 93 on the 6th January. A wonderful women born in Italy, I will write about her one day and link it here but not now, this is about my journey I dont want too many distractions.
Life slowly came back into balance. My label of Progressive MS made no difference to me not really, it just made it easier for other people to understand why I was who I was now.
Anyone reading this with MS knows how hard stress can affect our lives. Probably stress could be one of the main factors which triggers off this disease. Mine started not long after I lost my father in October 1997 so perhaps it is right. For those with MS this is an interesting article about how to deal with it, and for those reading this because they are my friends and what to join in my journey and understand more about me and my partner MS, the link will give you a little insight into what things I have to avoid and why.
Now I finally had my label I was scheduled on a round of appointments. My first one was to see the doctor at the Pain Clinic. Yes MS sadly does give you pain. Did you not know that? Some doctors say it doesn’t, but it does and it really depends on what type of MS you actually have. Did you know there was more then one type of MS?
Relapsing-Remitting MS (RRMS). This is the most common form of multiple sclerosis. …
Secondary-Progressive MS (SPMS). In SPMS, symptoms worsen more steadily over time, with or without the occurrence of relapses and remissions. …
Primary-Progressive MS (PPMS). …
Progressive-Relapsing MS (PRMS).
I am blessed with PPMS. This one is probably rarer then the first one RRMS. It can show up later in life …. although I am not convinced as I can remember having wierd episodes way back in 1981 but one neurologist told me if it was MS then I would be more disabled….err more disabled then whom? Every single person with MS the effects are different that is why MS is called a SNOWFLAKE disease. There you go you see if you stick with me you will all be MS experts.
Millions of snowflakes that’s us
Every person with MS will have different symptoms. Their diagnosis will come about different to another. Everyone of us our treatment will be different.
So THINK on all of you reading this who don’t have MS do not make the fundamental and errr annoying mistake of saying to someone with MS well I KNOW Joe Bloggs who have MS and he can still go on holidays. Good for Joe Bloggs but remember whoever you say this too may not take it well.
I have had it said to me and believe you me it really is annoying, because don’t these people actually think I would like to go on a holiday? Don’t these people think that if I had the energy even to travel 30 minutes without it wiping me out I would be the first in the queue to do it? Just remember there are approximately 2.5 million people in the world with MS and we are ALLdifferent. …………………….
Where was I, sorry I do have a tendency to wonder off ……. ah yes the good old Pain Clinic……PPMS has pain oh yes. Now again we will try and tell someone I have pain I am in pain and you will usually be encountered with “oh yes me too” I have the same. Meaningful people, wonderful people who have to encounter with something. IF you don’t have MS and your talking about your hip or poor knee joints, or arthritis etc etc et el….yes you will have pain BUTit wont be anything like the MS pain………….. yours will be crumbling joints, dry joints, slipped joints (joints i.e. bone not the smoking kind), its a different kettle of fish. (I love that expression……….now Zenda don’t get distracted).
Mine is down to a wonky nervous system. The signals from my brain to my body are all screwed up, so my pain in essence is actually well not real but equally its horrendously painful and lasts 247 unless I am asleep.I hate nerve pain.
Sometimes I actually feel like that photo as though I am on fire. Its horrendous. Nothing makes it better. Going back to the pain clinic my doctor told me all he can offer me is drugs they use for depression/Psych drugs which I have tried most of. He actually was quite honest with me and said all they do really is turn you into a zombie. I decided as they don’t suit me I would go naked. I only allow myself one 2mg diazepam at night which I take when I have been woken up with a spasm. So the pain clinic for me was a bust no point really it was just a case of get on with it, like I had been doing anyway.
I find my self management as good as anything the NHS (in the UK the NHS runs our medical care) can chuck at me.
Whilst at the pain clinic I was encouraged to attend an evaluation by a special type of psychologist cant remember her exact label or name. I went with my care worker. It lasted ages and exhausted me. The up shot of two exhausting hours was for me to attend a Mindfulness Class. Really? I was to say the least shocked after all that talking about my MS AND how it affected me a course on Mindfulness was going to be my saviour. I was given a sheet of paper with links on it and told to go away and have a look at the classes and what they were about.
Eventually after waiting weeks i was given an appointment to attend one. The class was in the City at 2pm for 2 hours. Now I explained quite clearly to this therapist the afternoons were a NO for me as by then I was exhausted and also to attend a class which meant I needed transport was impossible as I didn’t drive. It seems the therapist as per usual just didn’t bother to listen to me.
I often wonder if they get some sort of pay back to fill these classes as really the point of them well you can now get an APP and download it and get cured without even leaving your chair. https://www.healthline.com/health/mental-health/top-meditation-iphone-android-apps#headspace
After that appointment I gave up with doctors, and specialists, and spent the rest of my time filling in forms and writing letters of complaint about the way my mother had been treated by her Primary Care Surgery.
I just muddled on to be honest coping the best way I could and was at least pleased that our family were given an apology for the poor way my mother had been treated. It went some way for me to cope with her senseless death.
I don’t remember much of 2016 and I know Christmas was quiet as i couldn’t bear to think about it without my beloved mum being able to be part of it.
Life moved forward and I just learnt to get used to having my MS and did it my way as good old Frankie would say in his immortal song. It worked for me.
Yes life was just well………. trying to cope with my illness and my husbands COPD and life in general until that awful and fateful day of 3rd October 2017 at 05.00 hours when my world came crashing down the cliff edge.
I will talk about this on my next blog……………….
When Grief came knocking on my door……….
It suddenly went deathly quiet when my husband took his last breaths on earth it was surreal, I looked at him laying in the hospital bed he looked asleep but I knew he wasn’t as he was finally quiet and peaceful. I felt a sudden sense of disbelief he was gone, just gone like he never existed. I started to cry and rant “he cant be he cant be”, I tried to shake him awake he wouldn’t wake up. I just cried by burying my face into his thin dead arm and just cried until I thought my heart would break.
It was the 3rd October 2018 at 5.00am.
Grief swaddled me tight and wouldn’t let me go, I just wanted to be with him there right now. How could this be happening my mind was in a turmoil thoughts racing, Mike Mike don’t leave me please I need you I love you……how could it happen, how.
Just a week prior we were so happy. It was the weekend of the 23rd of September I remember it. Mike had woken up and as usual he was sitting in our conservatory in his chair and we started to talk about our future. We had been mulling over for a long time after he retired if we should move for our health.
He suffered with COPD, and I of course had my MS. Both of us yearned to be near the sea. It was almost like it was calling us both. “Mike said to me that morning, what do you think about me going over to the Isle of Wight and do a reccy for places that might suit us. Can we afford it?” “Yes of course we can” I replied. “Will you be strong enough though hun to do the journey”, and he looked at me with those blue eyes of his and said of course he would be, he hadn’t felt so good for ages.
Well I know that is true, as well I was constantly nagging him about his hoarding and if he was really serious about us moving he would have to start chucking out some of his treasures he had saved for years otherwise we would never be able to move. I found him one day not long after actually tidying up his bedroom cupboard I nearly collapsed with shock. He was obviously serious then about moving.
Going back to the conversation, I agreed if he wanted too then I would book him a ferry passage and find him a nice hotel. Whilst he was there he hoped to meet up with his son who lived there. It would be like a little holiday for him, he deserved it as recently he had a scare with his health on top of his COPD in a form of a lump in his breast. After tests it showed it was benign, phew one less thing to worry about, but worried I knew he was.
We agreed the date he would set off which was the 26th of September. He was full of it for the next few days, chatting about the IOW, the areas he should look at and I went off on Google and found some properties for him to have a look at outside.
It was time for him to leave, he was packed and ready to go to catch his ferry. Its not too long a drive to Southampton from where we live and he made good time. When he got to the ferry he rang me and we chatted a bit until he boarded.
Whilst he was away he rang me regularly with updates on areas, which I would mark down as good, bad or plain right ugly. He met a young couple in his hotel and he told me they chatted on the Wednesday night and he was so happy animated like the Mike I used to know a funny caring Mike who could sure spin a yarn and make people smile.
I asked him if he wasn’t too tired, and he assured me he was fine, he was a bit sad as he hadn’t managed to catch up with his son, but he was busy at work, and well it was short notice so couldn’t take any time off. Still Mike wasn’t too upset as we were going to go back anyway and would make sure the next visit was more organised. I had already found a few self catering cottages to stay and they would allow us to take our dog Lucy.
He finally arrived home on the 28th September, tired but happy. After a bit of rest he was off to town to buy his usual beer and fags, and asked me if I wanted anything. You see he was sort of my carer too as I was limited.
I couldn’t drive or go out on my own, so having him leave me on my own was quite daunting for me to be honest. I hadn’t been on my own for a long time now since he retired when he was 70. Mike was just always there and I knew if I needed him he would be there for me, so it was with a sense of relief when he came home I felt safe again. I asked him for some Maltesers my very naughty and sinful treat I allowed myself now and then.
Off he went on his big black mobility scooter. He loved that thing. You know I never would have thought in a million years I would see my husband driving one of them instead of a Hillman Imp or Mini, as Mike was an amazing driver and won many awards for Hill climbing and grass track driving.
He had no fear whatsoever. Seeing him drive off on his scooter was a far cry from the days he was trailing his cars, although to be fair only a few months prior to this he had come FIRST IN CLASS in a competition not bad for an old man of 71.
The first image below is his very last trophy he won a tropy Piston. This was for the last competition he did in his Corsa with my grandson Conner. (Mike with his mini and favorite Imp).
Going back to Mike driving off on his mobility scooter I really must stop this habit of mine of going off on a tangent.
He was out for a good hour I wasn’t in the least bit worried, as Mike was a talker, and I expect he was chatting to all and sundry on his journey to the shops he was a very sociable guy, he just loved talking and the locals new him and respected him, as well. Mike was a good guy one of the best and would help anyone who needed it.
Finally he came home….and yes you got it did you, he forgot my Maltesers he was so engrossed in talking to everyone about his journey to the IOW. Oh well I forgave him they only give me a stomach ache anyway as they have gluten in them. (A bit of useless information a lot of people suffering with MS have a gluten intolerance).
Where was I, oh yes. He was back home safe from his travels.
The next day was Friday and I had an appointment at the doctors the 29th. I heard Mike coughing in the night, but well that is normal for him. He had the worse cough most days, but still insisted on smoking, it used to drive me mad, but well what can you do, it was his body not mine.
Jade my care-worker was with me to collect me, and Mike started to come into the sitting room, we could actually hear him before we saw him, as his chest was whistling and wheezing so loud it was like an old steam train. He didn’t look special. Instinctively I took his temperature, it was up not high but up. When you have COPD you have to be careful as you can get chest infections very quickly. As I was going to the doctors anyway when I got there I asked the receptionist if she could arrange for a doctors visit as I didn’t want Mike going out with a temperature.
When I got back from the doctors, he was still feeling a bit rough. The doctor arrived soon after I did, and checked him over, and said he couldn’t hear any congestion, but put him on steroids and a course of antibiotics just in case. Jade went off and got them from the pharmacy and Mike started them straight away.
On Saturday he was better his temperature was normal again. I just assumed he was tired from his trip. He felt so well he went off again on his scooter to talk to his friend who owned a shop in the town and tell him all about his trip. He came home about an hour later. He did look tired, so I told him to rest.
On Sunday, he wasn’t well. Now I know that with my MS I just deal with it, nothing much else I can do, but someone suffering with COPD is a different thing. Its quite limiting, and Mike was at the point he got breathless very easy and tired. I would always regulate his condition, so I took his oxygen levels, his blood pressure and temperature, and bizarrely they were all low, which puzzled me. I had never known him to have low oxygen as even though he had COPD his oxygen was always good.
I told him I felt he should see a doctor but he wouldn’t hear of it and got anxious and unusual for him, irritated with me for suggesting it. I said fair enough go and have a sleep and I will see how you are when you wake up. Three hours later he woke up so i did the tests again and they had improved so I decided not to stress him more by talking about doctors visiting.
During the night I could hear him coughing again.
It was early about 6am I heard him go to the bathroom. He would always pop his head around the corner when he got up to see if I needed help getting downstairs or if I needed anything. I waited for what seemed an eternity but he didn’t come in, and I strangely enough I never heard him leave the toilet which set alarm bells off.
I felt anxious and worried so I managed to get up and go and see what was happening.
Never did I expect to see him like that.
I have a fold down support bar between our shower and the toilet, and he was hanging on to it, and well he looked terrible. “Mike whats wrong hun I asked”. He struggled to even look up at me, his blue eyes were gone they looked lifeless and his mouth was opening but nothing sensible was coming out of it. I could clearly see he was in distress and pain, and was clutching the side of his chest where he had the breast lump, I sort of heard him say PAIN, PAIN, help me..but it was like his tongue was swollen and the words were almost unintelligible.
They say when you are in a position of stress and fear your Adrenalin kicks in. I have no idea what I did but somehow I put a blanket over his shoulders and told him to stay where he was, i was getting our neighbour.
I managed to get my neighbour who was shocked when he saw Mike, we decided to leave him on the toilet with a blanket as he was simply unable to move. I finally got the ambulance and two paramedics make to attend to him.
They said it was urgent they got him to hospital. It was easier if they just got him and go, rather then wait for me to get things sorted out.
I went out with them, and when they put him the ambulance and he turned around and looked at me I knew he was in for a rough ride, his oxygen mask was filling with moisture from his breath as he struggled to get air, and his eyes were beseeching me to follow him to be with him.
I must have been so shocked as I fell right in front of the ambulance men I had forgotten for a minute I had MS and was just not thinking about my own safety it was blank gone. They helped me up and made sure I got back to the house safe. I was fine, just scraped a bit when i fell against our wall. They told me they would get the doctor to ring me with an update then I would be able to go and see him I had one last look of Mike before the doors were shut and the blue light started to flash and they were off taking my Mike with them.
The phone call finally came, it was bad news. She said he had pneumonia with sepsis and the next 24 hours would be crucial. He was in resuscitation ward and i could go and see him. My daughter picked me up and we raced off to the hospital.
Now really what would you think if your husband was rushed to hospital, gasping for breath given 24 hours to either live or die……really what would you think?
My daughter pushed me in my wheelchair to the resuscitation unit I was dreading going through the doors to see him, probably laying down with bits of machinery coming out of his body.
I felt sick with fear. When we got into the ward the first person we saw was Mike. Sat up in bed eating DRIED BISCUITS and having a drink. I was so shocked if I had been standing I would have fallen down.
He even managed a cheeky smile. I just cuddled him and hugged him with relief. He was telling us both he thought he was being pumped through with steroids and felt not too bad.
We talked and he said something odd, he told me close to my ear that he had lived the best 25 years of his life with me and he was really happy and then he said those immortal words I will never forget as long as I live……..
“Zen, I don’t want to go to the IOW to be truthful its a real DUMP lol…………………… can you start to look at Minehead?
Well I wasn’t sure whether to laugh or cry, that was the Mike I knew. He was back. My immortal Mike who had been through some terrible diseases and always bounced back.
He wanted his phone and a few other bits so I told him I would go home and his son could collect them from me, and give them to him, as he was desperate to see his sons.
All went as planned and phones and bits taken to the hospital for him. Mike rang me at lunchtime, said something about it not being the right phone, not quite sure what that was about, he was ok, and his other son was coming about 7pm to see him. He told me not to go back as I would be too tired, and would prefer me to visit him in the morning. I had no thoughts in my head I wouldn’t see him again so agreed.
I had a phone call about 7.15 I think off his son. He almost sounded relieved as when he saw his father he was fine, tired yes, but making his usual jokes. He did tell me later that when he was there he told him, he didn’t want to die, not really he wasn’t scared, but he didn’t want to die as he would miss ME too much, those words have been a comfort to me in my dark times to be honest. I felt relief he seemed to have rallied and was looking forward to seeing him in the morning.
I had taken my MS medication and was almost asleep it was about 9.15. It was the ward Sister. I knew straight away by her voice it wasn’t good. “You need to come now she said”. Your husband is declining fast. I thought I had misheard her, she repeated herself, I just said ok put the phone down and on auto pilot rang my daughter who collected me and we were in the hospital and by his bedside very quickly. I managed to get hold of his sister and sons who came to be with him.
He wasn’t there. He just wasn’t. The person in the bed looked nothing like my Mike, he was in a coma and breathing was so loud and laboured every breath must have been painful.
I stayed with him all night which brings us back to 5am 3rd October 2018, when he took his last breaths and left me and the uninvited guest grief came to visit me.
The fall out from his death was like an atomic bomb going off.