Wednesday, 31 October 2018

3yrs 22 wks - New blood results and the price of not sleeping properly

It seems like I'm always saying sorry these days, I did post last week (eventually) but forgot to put the links in Twitter and Faceboob so I don't think many people saw it except those who have done the 'email me when there's new stuff' botton.
The full price of the damage to my back lugging the Whoppet out of the field, the agonising pain and discomfort came full circle this last week - the disrupted sleep brought me down with a cold - my bodies natural defence to lack of proper sleep is to give me a bad throat, snotty nose, a cough and generally make me fee like crap for 5 days.
Monthly bloods were taken a week last Friday so a good 6 days before I got grotty so they actully look pretty good for once - except the thyroid one - but the doctor has increased the dosage on my Levothyroxine and promised to get it under control.
As usual at this time of year I'm starting to vaguely acknowledge that Christmas is coming and I really should do something about that. As usual thinking about it is all we have done, Gareth and I had a specualtive chat about gift ideas for various family members over lunch at Pho in town over the weekend. We didn't actually agree on any particular plan or buy anything, but we talked about it - so that's better than the last few years I guess.
Dog walking at this time of year in the evenings after work is DARK ... very very dark, the dogs have neon light up collars, all balls glow and Gareth and I are wrapped up like arctic explorers with balaclavas, gloves, scarfs, thick coats, jumpers double socks, even Bella the Whoppet has a lovely warm snuggly coat to wear and we're all still freezing our metaphorical nuts off. Better get used to it because it's going to be like this until March LOL
In other news, we ordered another piece of furniture from Oak Furniture Land - usual delivery instructions of 'send on a small van - under no circumstances send on a 7.5 tonne lorry' - you'd think after last time and them makin  that someone might say 'oh shit it's them again' and not make the same mistake for a 4th time - wrong - once again a 7.5t truck parked up on the main road, 2 very grumpy drivers who've walked down the 200 + meters to our house and decided that they can't carry or push the furniture safely on a skate. Allegedly this is replanned for the correect vehicle at the end of the week - I will believe it when I see it.

So here we go bloods - a few blanks this week as I now get them online from my doctors and I couldn't find a couple of results.

Thursday, 25 October 2018

3 yrs 21 weeks - The correct way to carry a dog log distances

Aologies for the absence. My only defence is I managed to injure myself quite badly and have been off my face on medication for a while.
Bella the 'Whippet' (and I use that term very losely - the 62.5% whippet is counterbalanced with 25% German short haird pointer) is really more of a Whoppet. Had a strop about leaving the park because daddy wasn't there, lay down in the middle of the park and refused to move. I had to carry her the best part of the park back to the car and have managed to not only pull a muscle in by back, but trap a nerve at the same time. Co-Proxamol at full dosage, Diazapam to try and release the muscle spasm.
It took me a week to even go to the doctors about it, my power of postive thinking to heal stuff failed spectacularly I've struggled to even function through the pain let alone be a more constructive member of society.
Things to note through this time
  • We've had the inlaws down for a visit, it was lovely to see them and lots of catching up was done and lovely food eaten.
  • We went to the comedy loft in Reading and saw Reginald D Hunter again and it was very funny even though laughing hurt a lot
  • We've had 2 dog emergencies, one with Winston nibbling the fur off his feet and legs which is now resolved and the second yesterday when Amber managed to get access to a new bag of dog food and try to eat her own body weight in dry food - she looked like she swallowed a football, there was much being sick, her arse falling off, uncontrollable flatulence - I'm hoping by the time I get home this will have lessened.
  • I've been signed off from the grief counselling sessions I've been having in recent months. I'm in a happier place now, it's never going to be alright about the number of people I've lost, but I'm okay that it will never be alright - if that makes een the slightest bit of sense
  • We had Kim and Lasse over for dinner again, a masterpiece of a combine come dine with me experience with lots of my lovely specility spare ribs to start, Gareth awewsome indoensian peanut chicken with egg fried rice (done properly not that wierd rice that looks like it has scrambled egg stirred through it) and then Kims amazing home made warm cinnamon rolls for dessert
Since then I’ve been flat out at work and what with a couple of weeks of crappy sleep because of my back ..... well now I’ve got a cold. I’m feeling properly sorry for myself, Gareth was crying with laughter this morning saying only dogs could hear my voice. After a bazillion gallons of pure honey and lemon juice the pitch has now lowered to Barry White but with a touch of baaaaaimg ..... like a sheep 🐑 I threw up 3 times in the field walking the dogs tonight but felt a lot better afterwards. 

Swings and roundabouts I guess by Monday when I’m back to work I will feel perfectly fine. In the interim I will banish myself to the spare room, the only beings in my house who will be kissed for the next few days will have 4 legs and tails. 

Tuesday, 25 September 2018

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

Saturday, 15 September 2018

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 :-)

Friday, 14 September 2018

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

Thursday, 13 September 2018

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.

Tuesday, 21 August 2018

3 years 13 weeks - Powerchair freedom looms


3 years 13 wks

Sometimes you’ve just got to roll with it, and rolling when required is just how it goes these days. Like the acceptance that I was going to need to apply for a blue badge, and that I might not ‘want’ to do it, the acceptance that there was a ‘need’ for it even if it wasn’t all the time.

We went to a Thai Food Fayre on Saturday, not massive a park with some tents and food trucks, we did a couple of laps at best of the event but getting back to the car was so very hard, my legs had turned to water.

That we hadn’t done the weeks shop yet and I now needed to navigate Sainsburys settled in my stomach like a sick dread. Fortunately the shittest scooter in the world wasn’t already out (yes they have 1 and they hide it in a cupboard to discourage people asking for it)

So I’ve left a couple of messages with suppliers to have demonstrations of super lightweight folding power chairs give them a try. I need to understand how the work, how much thy weigh, can I fold and move these beasties unaided, will they fit in the car easily would I need to rearrange the dog crate to fit everything? Important stuff, project manager stuff, risk mitigation and all that.

Randomly, it’s less than a couple of hours since I put my requests through for a demonstration session and one of them has come back to say they have someone in the area today – he can be here within the hour with the model I’m interested in and I hadn’t even got close to finishing typing this update. It’s going to raise some eyebrows at an on-site demo at work with me bombing round the car park LOL …. But hey-ho why the devil not J

I went for my monthly bloods on Friday so results should be available later today or perhaps tomorrow – since it took an extra couple of days for my repeat prescription to be released, there is a chance my thyroid reading might have slipped back to funky world for a short time.

And another random one – power chair demo done – I have the biggest smile on my face, it made life so much easier getting around – going through doors and in lifts would require some practice, but then it’s not for use in the office – it’s about life. It goes nice a fast, I can wheel spin it by turning fast and doing 'do-nuts'. In my head I can hear Comander Worf from Star Trek as he declares 'PREPARE FOR RAMMING SPEED' and yes mentally I have already imagined blasting through the Oracle Shopping centre in Reading at top speed - with a Jousting Pole ......... there is SOOOO much trouble I could get up to :-)

Really expensive, but what price is my freedom worth? The freedom to choose and go where I want when I want, to not have to be the one who has to call it a day because my energy has run out, or just to not go and do something because I don’t want to be a burden on everyone else and take away from their day.

Got another company calling back to arrange a demo of another brand – home one this time – LOL that’ll be interesting as Winston really doesn’t like anything on wheels – push bikes are a particular thing he hates, a wheelchair is just a funky push bike as far as he’s concerned J (he has taken umbrage with a wheelchair in the past) I’m sure he’ll get over it quickly enough, especially when it means he can go on adventures to the pub again.

Apart from the funks motor stuff, life has been quite sane for want of a better word, not my usual mad whirling through a million and one things and reaching the end of the week spent and in need of a good rub down with the sporting life.

AAAAND it’s now Tuesday, I haven’t hit the post button yet, but YAY I now have my blood results, the usual suspects are doing the usual things, but it’s all good J

 
OHHHHH  and apparently the cost of power chairs is ‘flexible’ if you challenge them on the cost of the chair, extra batteries etc. J

Haggle boys and girls, challenge the cost and get a deal J

Hope everyone is fighting hard xxx