3 years 17 & 18 weeks – Monthly bloods done and the price you pay for overdoing stuff

It’s been a funny old couple of weeks for me, apologies for the late post (faster than the last one though) the reason for this will become clear.

We did the ‘Royal Berkshire Show’ last weekend, very spur of the moment I went for Oxygen then popped home, picked up Gareth and Bella and off we went. Bob was on a half(ish) charge and the sound of the food hall was calling us.

Now in hindsight – taking the dog along was not our best plan. No dogs in the food hall (Kind of obvious really, and the whippet’s not passing for a guide dog any time soon LOL) We roamed for miles, I got lost and couldn’t find the car park. Fortunately Gareth remembered there had been a massive crane by out entrance so we made our way back towards it hoping that there was only one at the show. Bob was gasping for the last dregs of electricity in his batteries as we arrived back at the car.

All in all, along with shopping, faffing around, doing some house stuff and a couple of very late nights, because once again my Thyroid prescription had not come back on time – I ended up broken. Missing a day of thyroid meds and the effect is almost instantaneous physical fatigue. In my case this means my legs turn to jelly, they literally shake – as Gareth so delightfully referred to it – they shake like a shitting dog L

I came home at mid-day on Monday and worked from couch for the afternoon. Randomly it really upset me to think I might need Bob at work – he’s supposed to be my fun friend not a work thing. On Tuesday I got over myself and got Bob out and went for it. It was all in my head, the day was fine, I even had some envious ‘damn that’s a bit nippy, can I have a go in it’ comments which made me laugh. It took me a few attempts to work out how to swipe a security pad and still be able to open a door, but I got there. Wednesday I took my stick in with me (yep I finally found it) but by Thursday I was back to normal again.

It’s Friday now, I’m working from home, the bedding is being washed in the background. It’s blowing a hoolie here, the local facebook group is full of people asking for the details of good fencing people and for once we’re not one of them thanks to the work we had done to get rid of the crappy old ones.

The weekend came and went, British summer seems to have morphed straight into Winter, it’s cold, it’s wet and there is frost on my car first thing each morning now L Blood results should be available shortly so I’m going to hold off hitting the post button until I get them (EDIT – sadly they haven’t been reviewed yet and this is over a week late to be posted so I’ll post this now and put results out tomorrow.

Today I’ve had to resort to Bob at work again after some epic walks between the buildings for meetings this morning. To be honest I don’t feel so crap about that today it just is what it is and life goes on.

Hope everyone is well xxx

4 years ago diagnosis week continues

15/09/14 11:42

The LP results have thrown up some interesting bits it would appear I've been fighting a viral infection viral meningitis and Lyne disease have been mentioned. Apparently it's treated like flu - go lie down and rest drink lots of fluids.
The CT scan showed a 'fuzzy bit' in my brain though so the MRI which is now scheduled for Thursday will look into that

YAY for viral meningitis :-)

More realtime Diagnosis week from facebook

14/09/14
08:21 - Lumbar puncture in progress..... As I type :-(

(note this first attempt is when they hit the nerve for my right leg and I nearly Eric Cantona'd the head off the doctor who was 'supervising')

12:12 - Why am I waaaaaaaaiiiiiiiting, Whyyyyyyyyyyyy am I waaaaaaaaiiiiiiiting, Whyyyyyyyyyyyy am I waaaaaaaaiiiiiiiting - to get more paaaaaain YAY ;-) Streaming the Invictus Games on BBC iPlayer on the hospital WiFi. Still no sucessfully done lumbar puncture and they want me to rest for 5 hours once it's actually done

17:48 - Getting REALLY REALLY fed up now, at lunch there were 2 people in front of me for the anethesiologist and now nobody can tell me where I am in the queue. I'm tempted to just go home TBH I can feel crappy and take my own meds there as easily as I can here, but in better surroundings. Furious that BUPA closes all weekend and I can't do anything about this . I have an awful feeling I'm going to be here all night again because there is no organisation at all.

18:25 - Apparently they're on the way to get me. Here we go again, lumbar puncture number 6 of the day :-( *sob*

19:50 - Lumbar puncture count for the day is 8 !!!!! But it's finally done TFFT !!!!

23:43 - FREEDOM ...... well until the MRI tomorrow I have to be back at 10am. Good news, no blood found in what they took from the LP. Now just need the MRI to say whatever they saw on the CT scan that they described as 'shadows' is nothing and I can be happy to only have a 7 day migraine :-) xxx

It's quite odd reading all this back 'as it happened'. Odd in that I'd kind of convinced myself that I'd glossed over what was happening and made it seem less stressful than it actually was.

Reading it back I seem to be quite naievely thinking it's all a big nothing, although by submitting to 8 LP's in one day I was clearly taking it seriously too.

It's a bit like reading a book again, you know the ending but there are little things that happen on the path there that are new, and to be honest there are things that you 'hope' turn out differently - a bit like watching The Great Escape for the hundredth time and Steve McQueen is on that motorbike trying to jump the fence and you hope that 'this time he makes it' - you know it won't happen, history didn't happen that way, he didn't make it, he's never going to, but that little voice in your head still whispers in hope that perhaps this time it could be different.

Human nature I guess

3 Years 16 Weeks - Introducing Bob and the 'real time' - what happened during my diagnosis

3 years and 16 weeks

My profuse apologies for not posting an update for the last couple of weeks.

There really hasn’t been that much excitement to report, nothing life altering has happened, I’ve had a week off work (well if you don’t count the 3 half days I did for month end)

On the MS / Funky thyroid front, the second Power-chair demo on the Friday I talked about in my last post happened, it was great and I did make my purchase. ‘Bob’ as I refer to him is now in my car and available for use on the occasions when I want to do something and need to conserve energy. I’m getting used to his controls, doing a spin in place in a lift is still a work in progress, I managed to get temporarily stuck in a shallow ditch twice the first time I took him out with the dogs.

We went into London last week for a wonderful meal at Jinjuu, the Korean TV chef Judy Joo’s place. A day out which would normally have absolutely broken me, but Bob came along for the ride. Because the chair folds and is easy to lift (and I had Gareth with me as slave labour) getting on and off the train was easy, as was getting the park and ride bus into town.

The restaurant was just under 2 miles from Paddington and 25 minutes by bus (Theoretically this should be impossible and should take 4-5 minutes but it's london - Oxford Street - Bayswater ) we decided to ‘walk’ ….. it was pretty easy, a few ARGH where are the dropped curb moments, and one hilarious journey down a cobbled street which made conversation impossible because the vibrations meant I sounded like a sheep J BAAAAAAAAA - Oh and the chap in his car on Bayswater having a phone conversation with his windows down who was heard yelling at the person at the other end of the line that 'the woman in the electric wheelchair on the pavement is moving faster than me' - cruelly, I laughed, sped up and left him in the dust :-)

I’m still a bit under the weather thanks to a colleague who came back from a holiday in Ireland with what I can only describe as ‘the plague’ I’ve spent the last 3 weeks, coughing, sneezing, snotty and ears all bunged up. I’ve just got the cough left now, but ‘The Plague Monster’ as he is now referred to – well his name is mud J

This week is quite a momentous one in my MS History, I thought that I might replay some of my postings of Facebook in the weeks that led up to my diagnosis

12:09:14

Tracy Checked in At Basingstoke and Hampshire Hospital 19:05pm

Well they’ve ‘labelled me’ that can’t be good. Something went POP in my head on Monday. I was in agony, after 20 seconds it dialled back to full blown migraine. I saw the Doctor on Thursday and they said if it got worse to come back – so here I am at HantsDoc at the hospital – and they’ve attached a label to me

13:09:14

07:08am – I was rudely woken by a nurse gently shaking my shoulder, I frightened the life out of the poor girl by jumping and going AAAGGGHH – Don’t wake me without Coffee – That’s the good bit. Bad news is the doctor has been by and apparently – and I quote –probably been a bleed inside my head so they’re looking to do a lumbar puncture to confirm it – Scared but strangely my blood pressure has gone down so hooraah for blood pressure results, Play the glad game xxx

08:00am – I’m scared, it’s inside my headed that quite frankly terrifies me. We are supposed to be flying to Mexico 2 weeks today, what if they sat I can’t fly? Whats caused it, what is it? What is it doing to me other than making my head hurt like and absolute bastard?

12;00pm – They’re coming to do a lumbar puncture at shift change over and then a couple of hous of not moving and then maybe I can go home. The word ‘Stoke’ has just been used by the doc - Didn’t like that one bit

16:00pm – Lumbar puncture is now happening tomorrow morning, and no I can’t go home. Gareth had better remember to bring wine with him when he comes to visit later. He’s also bringing my old MRI’s from 1995 for them to review as apparently the whole brain tonsils wedged in the top of my spine thing might be a problem for the lumbar puncture.