Monday 27 February 2017

R2 WK39&40 - Storm Doris and The Royal Berks A&E

Apologies but this is another 2 week in 1 post update ….. once again it will ping around a bit and explain itself towards the end I hope

Last week : Good grief but I’m emotional this week. I can’t seem to listen to a song that doesn’t strike emotional chords and make me want to bawl my eyes out. It’s ‘women’s time’ but it’s not usual for me to be all weepy. Perhaps it’s because my 45th birthday is fast approaching and once again I’m terribly aware that my family are gone (typing that and I’m filling up again – conclusive???)

It also it might be nerves as tomorrow we have the home visit / assessment day with fostering services to see if they are willing to put me forward to the fostering board for approval as a foster carer. (note to self must FINALLY unpack that last box in the spare room when I get home tonight ….. we’ve lived in the house for a year and a half – it’s really is about time the boxes were unpacked)

It’s actually a really packed week all things considered this week, physio tonight, BlueSky tomorrow, a NYAS get together on Thursday in Wokingham dog walking and that annoying work thing too - by the weekend I’m going to be fit for nothing but a long lazy rest.

Still no news from the team about how the MRI went. I’m hoping that it’s all as planned and no news is good news.


NYAS on Thursday was cancelled as a result of ‘Storm Doris’ who I have to say was best described as a nasty bitch ….. 9 flattened Fence Panels 8 snapped fence posts and luckily for me I asked next door to move his car BEFORE the 3 panel section complete with posts collapsed into the driveway where his car had been parked. It’s looking like the repair / replacement fencing will cost approximately £1300 but by replacing the lot at least once it’s done the damn thing won’t come down again.

This week:

Oh dear – well that wasn’t a good start to the week, I got home at 01:30am from The Royal Berkshire Hospital having spent a good few hours having ECG’s, X-Rays and blood tests.

This will probably make those hardened MS’ers of you laugh out loud at my clear naivety but I guess it’s all a learning curve when something new pops it’s head over the top of the MS parapet.

I was preparing Sunday dinner when I moved my right arm to put something in the oven I suddenly had a pain on the right hand side of my chest which felt like I’d been punched ‘inside’. I went and sat down thinking it would go away, but the next time I got up and moved around it was worse, breathing was difficult a deep breath felt like it burned inside and it didn’t seem to be enough air going in and what was going in was all going down the left hand side.

I honestly was terrified. The armchair medical expert in me immediately started thinking about lung problems and in a few short minutes ………. well all things considered that didn’t help with the pain in my chest or the difficulty breathing at all.

The X-Ray was ordered to see if I had a Pneumothorax – I didn’t need to google this as I’m all too familiar with what that entails – watching it happen to my mum was horrible -  All clear though and I was finally discharged with a suspected muscular strain potentially with a chest infect (maybe) – At this point apart from chest pain and struggling to breathe I don’t feel ‘ill’ and the Yorkshire Pudding tray was hardly heavy enough to injure me putting it in the oven.

Aaaaaaanyway enough of this nonsense – if you haven’t guessed the punchline for this yet, I sat in the car on the way home running through whether MS was likely to be the root cause of the problem. I sat in the car and ran through all the MS symptoms I’ve had and then the ones I haven’t and there it was staring me in the face the completely inappropriately named MS Hug ……..

Hug my arse – it feels like my right lung has collapsed and it’s incredibly painful.

It’s actually reassuring to discover ‘it might only be MS’

It’s a little bit terrifying because it’s a ‘new symptom’ and I still don’t have those MRI results back yet so potentially this time it not come back with NEDA (No Evidence Disease Activity) – got to prepare myself for that I guess.

Whatever happens it will be okay ….. anything else is simply not acceptable.


Wednesday 15 February 2017

R2WK38 - 8 months MRI Day

No matter how many times I am put into that oversized Polo Mint immobilised ready for the sound of a junior school full of kids with metal biscuit tins full of lego ......
My stomach seems to tie itself in knots around my arse and the whole world falls off .....
The machine is fine, the banging is fine too (after you've done enough of these things you realise that you know 'that tune' as they go through the scans) the needle is fine for pushing in the contrast.
What sets my whole system off balance is the wondering what the results are going to be.
My body says everything is fine, I feel great MS wise I've been relapse free for over 20 months and my symptoms have all gone away.
The little voice inside my head however is a persistent nasty little sod and he's whispering 'a relapse is just what happens when it finally nibbles through something important' ....
MS is like that .... Unchecked it's like a never ending food binge through your Myelin with the occasional relapse thrown in to show something important got munched on.
What Lemtrada has done for me is to wipe out those horrid little T&B Cells that were stuffing their faces with my Myelin, the new ones that have grown to replace them have not seen T&B Cells eating Myelin so they shouldn't be copying or remembering that behavious (allegedly)
What if I'm wrong?
What if it's scoffing again?
What if that Contrast lights up like Blackpool at Christmas?
What will it mean for the future?
What would come next?

What if I'm just a complete and utter idiot and am driving myself round the twist?

I need to be there in an hour and 15 minutes ..... It's a pain in the arse parking at Basingstoke Hospital so I'm leaving early and getting there in time to sit and have a cup of coffee and rule the world of candy crush ....

Good grief but I feel sick - but until someone tells me the results I guess thats just the way its going to be.


The MRI was blissfully uneventful as usual, the only interesting features were the following :
  • When they put the cannular in so they could administer the contrast during the MRI the nurse remarked that when she was insterting the needle she could 'feel the scar tissue on the vein and it made it very difficult to insert the needle' - I guess that's a sign to me that I need to stop using the trusty vein in the right elbow as an extraction point - it's made 20 months of monthly tests but it's time to find another stabbing place.
  • The last but one part of the scan sounds like the music played during the scene from Flash Gordon where Flash is approaching Mongo City in Imperial Rocket Ajax and the minion says to Admiral Kara 'Flash Gordon Approaching' and she replies 'What do you mean Flash Gordon Approaching' then she she orders all weapons are fired 'In honour of the Emperor Ming's wedding' - apparently saying the words from the scene and then starting to sing 'FLASH AHHHAHHH' at the top of your voice with an MRI machine backing track is really bad form and quite disconcerting for the staff - LOL
As always my world is best described as a bit weird and swirley ..... I like it that way xxxx

Monday 13 February 2017

R2 WK38 - I'm blaming being poorly for being 'special'

So nobody pointed out that I'd miraculously 'lost 10 weeks' of my weekly updates - I randomly jumped from 34 to 44 a few weeks back and never noticed. All corrected now though.

After a week of feeling exceptionally crappy thanks to the plague that Gareth gave me I now feel significantly less crappy - well I'm back in work again and hopefully not infecting people.

Having the winter bug had the usual 'amplifying everything' effect on me. My balance was dreadful, my energy levels rock bottom and at one point some random loss of sensation in my feet (I'd forgotten how horrible 'not feeling your feet' was and just how uncomfortable the numbness and lack of feeling was - is that bizarre - lack of feeling is actually uncomfortable - is that an oxymoron or just really very weird??)

Apart from a lot of couch time this week has been incredibly uneventful as a result. It’s a sad fact that the most exciting thing that's happened during the week is that the dogs refused to snuggle me because my coughing and sneezing made me uncomfortable to snuggle with.

We've hand more 'snow' down here in Sunny Berkshire - well there was a light dusting on the car on Saturday morning. before I headed off for Oxygen in the chair outside the chamber (wouldn't even consider going pressurised until I'm feeling a lot better - some lessons are easy to learn at the first attempt)

I have weigh in tonight at slimming world which I suspect will not be a raging success. Along with appropriate vitamins and minerals over the course of the last week I have self-medicated with Cadbury’s giant chocolate buttons and sour cream and chive Pringles. Not your traditional health foods but with my taste buds on the frisk it really was all I felt like eating, I shudder to think of the number of Syns they made up.

We also have a nice man coming round this evening to give us a quote for replacing the stairs in our house. The 150+ year old beast has to go. With none of the steps the same depth, height or width they’re a hazard and need to be dealt with. I’m hoping the nice man can do something that will look great and be Tracy safe as well as Dog safe (I want wood but not shiny wood or we will all be slipping and sliding on them)

Last but not least for this week – Gareth and I are both now fully approved by NYAS so we have to provide passport photos and signed paperwork and then the volunteering work can start. YAY

Stay well and take care of yourselves xxx

Tuesday 7 February 2017

R2M8 - Blood results and my naughty Thyroid has been spanked

So long awaited, and not covered in blue fur like old cheese - the blood results are in.
Two things that were top of my list for this months results, had the lymphocytes finally started moving after the 3 month stagantion at 0.7 (ish) and also what was that naughty thyroid up to now ?
After a month of depriving myself of broccoli, cauliflower and cabbage (which on slimming world is quite an achievement) to try to protect the thyroid function and working on the theory that the power of positive thinking is huge - It's MY thyroid and it WILL obey :-) ....
I have an ego the size of a planet I know but I have self belief and determination to help carry that monsterous ego - they thyroid got the same treatment that the MS did - immediate cessation of what was 'feeding' the behaviour
Lymphocytes are up to 0.95 but that is likely to be a bit of a false high as I'm currently battling the winter lyrgy (courtesy of TPCTSMFH) and the Thyroid is now back to exactly where it should be - slap bang in the middle(ish) bit

Monday 6 February 2017

R2 WK37 - Where Oh Where did my blood tests go ?

Apparently the blog has been big in Norway this week - Hi to everyone in Norway *Big Wave* Hei til lesere i Norge xx
I've got a proper grump on this morning, so I'll apologise in advance that I'm not my usual sunny self. My bloods which were taken on January 27th still are not back and I'm wondering if blood grows blue mould on it like cheddar left for too long in the fridge???
I'm also unhappy to report that Gareth (who for this blog entry will be referred to as - The plague Carrying Toxic Swamp Monster From Hell - or TPCTSMFH for short) has given me his sickness.
I woke up yesterday morning and reached for the button on the alarm clock to turn the backlight on and check the time and my hand was shaking. TPCTSMFH of course was already confined to the spare room at that point with instructions to not give me his disease - apparently too late.
Apparently that Karma Bus I mentioned in last Monday's post has not just run me over, it's reversed back over me again to make sure I'm good and splatted - Must mention to Matt that in future if I'm a smug cow about him picking up bugs from his kids that he is to remind me of this ...........
We popped into Reading on Sunday to go and collect my now repaired engagement ring from the jewellers and after walking up a short flight of stairs my legs and balance all seemed to disappear at once - TPCTSMFH asked was my MS playing up - cheeky bugger - no it's bloody not, I'm a bit wobbly because of your disease TPCTSMFH but hey guess what I'm in town doing the shopping not lying in bed feeling sorry for myself and hoping to sleep until it goes away.
I'm in work this morning - well I made it here - YAY - not sure how long I can keep going but it's the thought that counts.
I'm pretty sure other stuff happened in the last week - just right now I really can't for the life of me remember anything much about it at all. Can I go back to bed now please ? Or just home to the sofa where I can snuggle under my blanket with the dogs and watch food porn through my eyelids ....

Good grief but I'm awful when I'm poorly - I want to slap myself in the face and tell me to pull myself together but I quite honestly can't be arsed so I'm going to stop now before those of you that have my phone number or know who I am come and deliver that slap in person. (they should be slapping TPCTSMFH)

Virtual hugs, Beechams powders, and 4 sachet's of Emergen-C Energy Release and Immunity Support taken in one go (yep that's 4 times the daily dose but feckit I'm not putting up with this shizzle)

Much love
TPCTSMFH (well I'm one too now)

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