Thursday, 25 April 2019

3 years 49 weeks - life returns to something vaguely resemling normal


Oh dear I’ve just read back that last post that I thought I’d done pretty well in the dark courtesy of Siri …. Apparently not, it’s garbled there are some ery odd things here, but I’m going to leave it as evidence that Siri is an idiot and I was pretty blind at the time.

Apologies for nearly 3 weeks of silence, but the eye injury turned out to be far more serious than we had ever imagined it would be. The Ulcer in the gouge in my left eye was infected. It took 5 days of drops on the hour, every hour 24 hours a day just to get it a little under control, then another 4 days of every other hour 24 hours a day. Over the Easter weekend it came down to every 3 hours and as of Tuesday I’m down to every 4 hours but also have a gel thing that has to go in 3 times a day as well.

The infection has caused some scarring to my cornea which the Ophthalmologists think is permanent and has caused about 25% sight loss in my left eye.

Fortunately I guess as I (very badly said in the last post) my left eye is the rubbish one anyway so 25% of not a lot isn’t really the end of the world. It’s been quite disorientating learning to see around it, the headaches and light refractions around any light surface distracting. But all in all ….. could be worse.

Having a ‘blind’ bit in my eye isn’t how I thought it would be, it’s not dark for starters, it’s like a piece of frosted bathroom glass is in the way, it’s a light bit of frosted glass that I can’t see through but it’s not dark.

I’m back at the hospital in a couple of weeks for the next review, so more on that one later.

I went in on Tuesday and tried to get my monthly bloods done, sadly the  new nurse couldn’t get blood from me, either I turned into a stone, or she had performance anxiety trying to do it in front of the trainee nurse J So I now have a massive bruise in my left inside elbow bit.

It was Gareth’s 40th birthday on Friday, a surprise visit for him by his parents and a surprise dinner with friends on Friday night. It was a lovely weekend although not without its challenges.

Sunday lunchtime we tried to drive down to Portsmouth to see Gareth’s grandmother and were witnesses to a very serious head on collision on the A33 and spent a lot of time out in the sunshine helping look after the injured the police, fire and ambulances were magnificent and were impressed that the head on collision was so well organised when they got there (Off Duty poolice traffi cofficer, ex army, first aid trained program manager co-ordinating the post accident activities - we were awesome),  

Then an unplanned taking apart of the spare bed frame and dispatching it to the tip because it was completely broken, a trip into Reading to disassemble another bed frame and bring it home and reassemble it in time for Gareths parents return from Portsmouth.

By Monday all I wanted to do was sleep and get over the 4 day weekend J

I’m back in work now after a whopping 2 weeks off, the first sick note of my entire working life – seriously never had one before until the ripe old age of 47 – that must be worth some kind of achievement badge J the 4 hour drops and gel cycle is manageable now and I’m starting to feel something vaguely resembling human again.

Back to the doctors tomorrow having drunk a gallon of water to see if this time they can get blood from the stone J

Hope everyone’s having a great one, much love xx

Wednesday, 10 April 2019

3 years 46 weeks - OMFG the week of hideous pain

Simply where to start ....

It’s wednesday I can finally see again so I’m updating the blog.

 It should be said that any mistakes that I made in this weeks blog on the Responsibility of Siri and not my crap typing

 Okay let’s start with what I’ve already told you about the spine guy and getting my left-arm sorted    Had he mentioned in our previous discussions that he was going to directly inject into the nerve cluster  then I might of been a little more apprehensive    I went in there expecting pain free loveliness and getting over my fear of being stabbed in the spine   This was not the case

When someone injects directly into your nerve cluster, it’s a little bit like being electrocuted like what you see in movie torture scene - it really bloody  hurts.  Especially when whimpering in pain you beg him to stop so he does. You’re now trapped - you can’t move, just lay there and swear and then tell him to get in with it. In totial the agony actually lasts the best part of three minutes whilst electrocution feeling continues   Fortunately as soon as they remove the needle everything went back to normal pretty quickly and it seems to have done the trick so far.

 The surprise horrifically painful thing

I should start by saying that given the choice I would go back to the spine guy and let him do ^^^^ again another 2 or 3 times before I EVER go through the next bit again.

 We are walking round Costco on Saturday with Gareth’s mum and dad when my eyesight started to go very weird   I could literally see light trials from the fluorescent lights a bit like being in a nightclub without the good music and nice dunks.  by the time we left I realised my left contact lens was becoming painful I took it out and thought no more of it.  Sadly by that point the damage was already done.

Sunday was just horrific I had my eyes checked I was told it was a scratch keep it clean it would be okay but I was so sensitive to light and the pain was so awful I didn’t know what to do with myself

 There wasn’t a chance in hell I was going to get into work on Monday those electric lights they have in offices burnt my eyes, by now left side of my face felt like i had been rabbit punched to the side
Of my face - my eye was so painful I didn’t know what to do  When I hadn’t slept at 3 o’clock on Tuesday morning I dragged Gareth out bed and to the hospital.  Confirmed (again) Scratched my eye but quite possibly an ulcer as well -  we left the hospital at 7 am with instructions to return for the eye A&E at 9 am  -  sleep is for girls

 Was confirmed at the emergency eye clinic not only do I have a big gouge on my left Iris there is an ulcer there   I now have many types of drops one of which has to go in every hour on the hour 24 hours a day

 I woke up today and I have almost no sight in my left eye it looks like someone has put a brick through the windscreen of my vision and I can see almost nothing  Neadless to say when I phoned in this morning to my boss I was in tears he’s just told me not to bother for the rest of the week. I’m back at the emergency eye ward tomorrow at 1:15 pm to see how it’s coming along and I’m hoping that the loss of vision is the ulcer feeling And not permanent sight loss.

 Now before anyone gets excited and thinks this has anything to do with Lemtrada  it’s just something that happens to people who wear contact lenses.  It’s an extreme reaction to something getting under my lens and scratching my eye  Needless to say my vanity is simply not that big and this is not the first eye injury  as a result of wearing soft lenses however it will be the last.  I’m simply not willing to ever go through this again   My eyesight might be rubbish my left eye might be my very rubbish eye  what is rubbish  as it is I can see through it and I’m not willing to risk that.

 So apologies for a strange update but that’s all I’ve got right now sitting here in the dark talking to my iPad with one eye closed and the other mostly closed to hide from the light of the iPad screen

 Hope you’re all doing well much love xx

Wednesday, 3 April 2019

3 years 45 weeks All is good with the world


Date night was awesome, if you haven’t seen the trailer for Fisherman’s Friends, take a look at it on YouTube, go see it and enjoy. It was everything I hoped it would be, funny and poignant, nostalgic and heart-warming. And yes it also made me cry, but then these things usually do. I’m sitting here typing about it 7 days later and the little pictures playing through my head of parts of it are still making me smile as I type.
Animal updates:

·        Bella has been ‘done’ and had her follow up appointment, she’s been a dream and not nibbled at her wound or stiches and isn’t in the mood for zoomies yet.

·        Murphy had his check up on his awful leg injury and whilst still looking rather odd is healing nicely.

·        Amber’s blood tests came back in normal parameters
Friday I’m in Theatre getting stabbed in the neck to try and encourage the disc which is trying to escape back into where it should be. I’m incredibly nervous after the whole getting a lumbar puncture debacle at Basingstoke hospital back in 2014 when was diagnosed (something I don’t think I’ve ever shared on here but I didn’t want to freak people out – the incompetence of one team isn’t something that everyone else should be measured against) It’s being done by the top guy in this area, it will be fine, I’m being silly, ignore me.

Date night this week was last night, a trip to the Six Bells for a lovely Indian meal after a surprise trip to the vet with Bella for a vaccination that couldn’t be done which completely buggered up our plans for the evening and dinner. We came home and I promptly fell asleep on the sofa – I am a rubbish date I think LOL

Apart from being stabbed on Friday, we also have Gareth’s parents coming for the weekend so there needs to be a flurry of doing laundry between now and then and as usual I’d really like to have done some long overdue bits of work on the house too – a bit of touching up paintwork where it’s been Bella chewed, but that’s not going to happen. I’ll put something ‘slow cooked’ on before I go to the hospital so it can just be dished up later. Saturday I’m going the BBQ route because that’s just how we roll, perhaps Greek Lamb marinated in lovely yogurt and mint goodness.

MS-Wise – everything is on an even keel, pretty normal and very ‘dull’ for want of a better word. I guess when we have MS, Dull and boring is good, it means that nothing is going wrong and causing us concern.

It’s got to make for pretty dull reading though. I’ll admit these days I start my weekly update and think what the heck do I write that won’t make people think YAWN. I’m not going to stop, but I guess I’m acknowledging and apologising for the simple truth that there isn’t more exciting things to tell (although the ‘post stabbing in the neck’ one next week might be more interesting)
Gareth’s 40th is also coming up on the 19th, finally his age will start with the same number as mine – it’s been a long 7 years with him being a thirty something and me being 40 something, I now get just under 3 years of relative peace until the big 5-OHHHH happens when all the micky taking will start again. Once again I find myself wondering where the heck all that time went, how can it be – then I read back through the last few posts and think – yup Tracy, you’re an old fart better get used to that LOL

And on that bombshell (if you didn’t watch UK Top Gear of old this phrase will mean nothing to you)
I’ll stop now and admire the lovely sunshine outside the office window, AND THE SNOW THAT IS FALLING ….. gotta love a British springtime xxx

And just because it makes me smile, here's a daft picure to leave you with xx


Tuesday, 26 March 2019

Hei til folket i Norge

Sorry if Google translate got that horribly wrong, but my Norwegian is none existent.

I've just been looking at the stats for blog views and the blog seems to be read by a lot of people in Norway, I have no idea why it has so many readers there, but thank you all for reading and stay strong, keep fighting and I hope you all kick MS squarely in it's balls xxxx

3yrs 44 wks - Being bankrupted by pets and blood results


Very ouchie weekend – yet another thing to add to the lit of ‘things Tracy is allergic to’ – my new very expensive face cream. It would appear when applying it I got it far too close to my eyes and I’ve spent all weekend like I’ve been punched in both eyes, they’re puffy and feel burnt and bruised and they've been feeling like that since last Friday - it has been horrid. Anti-Histamine’s are in full use and needless to say I’m steering well clear of the cream for a few days which sadly will probably make my eczema play up  and make my face all dry and flaky but at least my eyes won’t look swollen half closed, red and horrid.
My car is all sorted with the paint protection and the interior protection applied again and Bob is installed back in the car – I’ve done everything I wanted and needed to, but I was very aware that he wasn’t there; it’s odd how insecure I felt without him.

Busy week for vet visits, Amber has her annual Phenobarbital blood check tomorrow which we are hopeful should come back with the usual ‘all okay’ output. Bella is being ‘done’ on Friday (assuming the contrary mare doesn’t come into season again before then)
I’m also being taken out on ‘date night’ by Gareth on Wednesday, off to the Showcase to watch the film Fisherman’s Friends which I suspect is going to be funny and poignant and may well make me cry buckets. (hopefully my eyes less stingy and burn-y by then or salty tears are going to be a nightmare)

The sun is shining here in Berkshire, spring is in full swing with daffodils blooming, new growth is coming in on the trees and the days are longer and lighter. It certainly makes for a much more ‘up’ feeling being able to take the dogs to the park for a run in daylight rather than in the dark wrapped up like we are going on a polar trek with head torches, flashing dog collars and glow in the dark balls. Wet muddy dogs needing a bath when they get home, the bathroom looking like a muddy tornado passed through it. Just sitting in the garden with a glass of something in the evening sunshine
It’s now Tuesday – I wrote the above yesterday, I’m back in my contact lenses today and my eyes whilst still a bit puffy are back to feeling normal.

Last night was incredibly traumatic, at about 10:30 Murphy cat came home with what looked like a possibly broken leg – cue panic stations, an emergency call to the 24 hour veterinary service and a mad dash to get him looked at. Fortunately, it wasn’t a break, but it was an abscess caused by a nasty bite from another cat. The little bruiser has been scrapping again, and at the age of 9 he’s come off worse than a bit or ear damage this time. His leg is now part shaved it’s been lanced and drained and looks bloody awful but his leg magically shrank back to the correct shape. I’ve had to email all our neighbours and let them know what has happened to him, as he routinely lives in all 7 houses on our road. I’ve given the instructions for how to bathe it with salt water as well.

Nearly £300 poorer; Ambers Phenobarbital blood tests tonight (about £100); a £400 bill at the end of the week for Bella being spayed – bloody ouch.
A nice big euro millions win tonight certainly wouldn’t go amiss LOL.

Sun’s still shining though, happy days xxx
Lastly – they were not complete yesterday, but today my bloods are fully back. And great news – my thyroid readings are back in the normal range – BARELY but back in the normal range YAY for a ‘normal’ thyroid reading so here we go my month 46 blood results are in, enjoy …..

Thursday, 21 March 2019

3 yrs 43 weeks - New car, new bloods, and new appointment with 'The Spine Guy'


Another busy weekend with work cutting into activities, but also a lovely win with another pair of Levi’s 501’s -  I went back to get another pair, could only get them a size smaller which has happily worked out rather well – these ones don’t slide down a little when I walk.
I picked up my mew car on Monday night. Itch loved version of my belowed rent car, I pick up my neplaceme smaller which has hapily  pair of LEvi' is a newer version of my much loved Tourneo and hopefully will bring me as much joy and comfortable driving experience as the one I’ve had for the last 3 years. It seems odd to be so attached to a car, but it’s been a pleasure to drive and so very practical with the massive dog crate being permanently set up in there and the ability to have Bob in there too. I’m still having ‘memory fail’ moments about it being a button start rather than a key, I keep panicking that I might have walked away and left the keys in it. The heated seats however are a joy.

I’m back to the Spinal surgeon on Thursday now I’m finished the Steroids for the allergic reaction to the Gaberpentin. I’m hoping he can suggest something else to try rather than stabbing me in the neck with a big needle, the Gaberpentin had actually started to have the desired effect before it all went wrong, the feeling to my skin in my left arm had started to return to normal and the heavy feeling had gone – it’s all back again now.
Monthly bloods again on Friday, fingers crossed the badly behaved thyroid has started to behave a little better and the readings come a little more in line with normal, I’m so over the thyroid weirdness now, it’s rubbish and I’d like it to get itself under control.

In other news Gareth and I have managed to do something which is almost completely unheard of ……
We’ve booked a holiday !!!

It will be our first proper holiday together in 2 years !!!
We are going for a week in August to Watchett in Somerset. We have booked a dog friendly holiday rental with a completely secure garden for the beasties to run in. It seems such a long way off, but it’s only 5 months away. We decided to stay in the UK this year because Amber has been so frail with her stroke and her age that we didn’t want to leave here with Aunty Kathy or Kennels in case something happened. When that time comes we want to be with her, holding her, telling her we love her and it’s okay to run free now. (cripes but just typing that had tears welling up)

Apart from that, life is incredibly beige if I’m honest, I feel like I should have more fun, be more exciting, I’m sinking into middle aged dullness.
So my promise to myself for going forwards is that I’m going to do more and be more, just more everything. Reading my own updates I’ve decided I need to have a more exciting life

xxx

Wednesday, 13 March 2019

Gaberpentin - Allergic reaction with potentially severe outcome


An unusual out of cycle post for me but I think it needs to be told.

I should add up front this isn't something caused by Lemtrada - I'm allergic to a lot of meds in a lot of different ways so yes I'm one of those very sad people who read the fine print on those bits of paper that they put in the box (a few days after I start toking something because I don't want to 'fake myself' into looking for something.

Gaberpentin – I’ve had to stop taking immediately because I’m having an allergic reaction to it.
I should say I know Gaberpentin is frequently prescribed for people with MS for neuropathic pain. For me it was NOT prescribed for MS it was prescribed for the pesky C7 spinal problem I have and as of an hour ago it’s now on my list of ‘never to prescribe again because she's allergic’ notes on my medical record.

I got out of bed yesterday and everything ached, all my muscles in my body. Just a dull ache manageable with Paracetamol and I thought nothing about it. My balance also had become substantially worse than normal. This morning same thing – I ached in all my muscles took a couple of paracetamol and toddled off to work a little wobbly.
I got here and decided to just have a quick check of the paperwork that came with Gaberpentin to see if it could be causing the aches …… this is what I found: http://www.mhra.gov.uk/home/groups/spcpil/documents/spcpil/con1531717994252.pdf

 
Needless to say having lost my younger brother to multiple organ failure (Kidneys and Liver) I freaked the f*** out was on the phone to the doctors immediately –can you be here in 30 minutes – yes sure I can the weekly project call can wait  ….

No more gaberpentin, and a big course of steroids and anti-histamine to counteract the allergic reaction. My bloods aren’t due to be taken until next Friday but they’re probably going to be more than a little ‘funky’ this time. (Must let Dr N know in advance)
For those who read this regularly this next bit will be a ‘here she goes again hypothesising’ moment. For those who are new – please bear in mind this is me wondering out loud and in no way am I a medical person – what I am is a program manager / project manager in Telecoms – I analyse risk and mitigate It on a daily basis.

So brace yourselves – here I go.

·        I wonder how many people with MS are taking Gaberpentin

·        I wonder how many people with MS have symptoms like I have and just put it down to ‘MS Stuff / Weirdness’ and carry on taking it?

·        I wonder how many people who’ve had Lemtrada are taking Gaberpentin and have had these symptoms for a while or developed them post Lemtrada and put it down to 'MS Stuff / Weirdness' ?

·        And lastly the big one – Since that nice warning on the Gaberpentin paperwork says these feelings can be as a result of muscle breakdown which can cause critical or fatal kidney failure – The whole ‘Good Pastures / Anti-GBM’ warning with Lemtrada  - could that also be as a result of this?
(Anyone else having that feeling of groundhog day??)

So there we go – not my usual 2 pages of soap boxing, but interesting questions that should be asked and a little information that I think needs to be shared with anyone who’s an MS person, a Lemtrada person or just someone taking Gaberpentin.
So it’s steroids for 5 days YUCK – I really hate these things but if they’re helping to neutralise the allergic reaction they must be done.

Follow up with Mr B has been requested – looks like I’m going to have to have more of the revolting things injected directly into my spine
So happy days ladies and gents xxx