Wednesday 29 May 2019

4 years and 1 week (or 1st week of year 5 depending on how you count time)

2 weeks into year the 5th year or 4 years and 2 weeks post treatment start depending on how you view it.

The long weekend has been lovely, I ended up taking the Tuesday off as well as the Bank Holiday Monday in the end. Friday wasn’t going to happen, I had another implementation over the weekend which started at 10pm on Friday night and was finally all done and dusted by 01:00 Sunday morning so 27 hours in total, but we did include time for sleep in this one which was lovely.
Gareth spent Thursday to Sunday with his Family ‘oop norf and I stayed home as dog mummy. It was a shame we both couldn’t go, but with Winston’s anxiety right now it wouldn’t have been a good experience. Gareth got to see the Hallilapse show that Christian has been working on for the last 5 years, he side it was awesome and given the extra number of shows that have sold out it’s been a roaring success.

I went to pick up my new glasses on Saturday, randomly my ‘seeing glasses’ which were due to be there were still in, but my new prescription sunglasses which weren’t due until this coming weekend had already arrived. They look fantastic, so shiny and new and when I put them on ….. well then it became really obvious the changes in my sight since the injury. The whole world was suddenly much clearer. My ‘seeing’ ones apparently failed quality control and the lenses re being remade again – quite grateful they are so strict with it and that they are taking the extra time to get it right.
In the meantime though, I’m stuck with the hideous black ones that were never meant to be seen in public.

Monday was a little bittersweet, Kirsty and Jake joined for K9. She had big news and I’m both delighted that she got the job she wanted but also sad that she got the job she wanted – it’s in Vienna, so once again she will be moving away once again L.
So I’m back at work today, a nice short 3 day week, sadly I can report that once again I have not won the lottery so my retirement plans remain on hold. I also have 5 days work to cram into 3 so that’s going to be a fun challenge.

Winston is at the vet tomorrow for a ‘mini-MOT’ – we have a trainer coming on Friday to help us with his separation anxiety and she asked we get him checked by the vet first to ensure there isn’t an underlying medical condition contributing to his behaviour change. This makes a lot of sense, dogs can be hiding many things with their generally ‘normal’ behaviours and to be honest I hadn’t even considered that there might be something medical as a trigger. She suggested possible things like ear infection, or because of the corgi in him, hip or back problems.
We have dog walks booked for the week and very little else which feels very rewarding. Just some time to chill out and enjoy life and chose what we want to do when and if we want to. I know I’m supposed to be turning over a new leaf and living more rock-star but  week of very little looks lovely right now.

I’ve got tomorrow to get through, 4 years since we lost Ian, I still can’t quite get my head around him being gone, my little brother (well as a little as a 40 year old can be) but it will be okay, emotional but okay.
Six and a half weeks to our holiday in Watchett when we booked it, the holiday seemed so far away, over 6 months away – where the heck did that time go?

We have a military wedding in Portsmouth at the end of July to prepare for, got to get a dog sitter sorted to move into our house for the weekend to keep the beasties company and exercised while we are gone.
Life is gloriously normal – long may it continue xx

Monday 20 May 2019

Year 5 - here we go again, a review of changes and month 49 blood results


4 years and 1 week since treatment start
WOW

My Facebook feed for the last week has been full of updates from treatment week and then from round 2 a year later. It really does seem very bizarre that it was so long ago because in my head it’s seems like it was only a short time ago. So much has happened, but by the same logic in terms of my MS – well nothing has happened.
I’m now a 4 whole years NEDA – No Evidence Disease Activity. It’s exactly what I hoped for when I chose to have Lemtrada I wanted to stop the MS in its tracks and I did.

I guess it’s time for a bit of a recap really a ‘then and now’ of how things are going, please excuse the lazy copy and paste from 4 years ago for the ‘then’ part, but as I said from the start this was my way of keeping myself honest, and check I'm not remembering stuff with rose tinted glasses and to present a realistic view of how things are.
[INSERTED COPY AND PASTE]

What I had before that I now Do NOT have :
  • Cog-fog - Gone - The oxygen therapy helped with this greatly my brain is now clear (well as clear as it's ever going to get)
  • Constant Foot drop Gone - If I'm really tired this does reappear a little but a little rest and it disappears again
  • Spaghetti leg Gone - This was my name for 'whole leg drop' - the extreme of foot drop that had me in a wheelchair coming back from Milan in April 2015 - If I really overdo it and walk too much occasionally I can feel my leg getting wobbly so I slow down and rest up
  • Tiredness  - Mostly Gone - The oxygen therapy helped with this, I have tried never to call this MS Fatigue - MS has NEVER stopped me getting up and getting on with things. I regard Fatigue as an extreme where the exhaustion stops you in your tracks makes going on impossible to achieve not just bloody hard, so I call what I have tiredness - My medical team smile at me in that 'yes dear' way when I explain this so I'm probably playing it down  EDIT- I should add that I often talk about tiredness and fatigue nowadays, but this is a result of the thyroid problems that I’ve experienced in the last year and a bit – we all know thyroid problems are a distinct possibility post any IV Treatment and we have had the ‘mother load’ with Lemtrada. I had hoped to be one of the lucky ones that it passes by but sadly not. It’s why I now have ‘Bob’ for doing more strenuous things. On the sliding scale of things – it’s a small price to pay for the rest of this list being gone.
  • Bathroom Urgency - Gone - And oh boy it's nice not to hear that screaming claxon in my head yelling 'Go NOW you're about to embarrass yourself' 
  • Optic Neuritis - Gone - My vision has settled down completely now. the pain in my eyes and loss of the ability to see anything in detail (like words on a page) all returned to being just as rubbish as it's always been my whole life. My eyes might be dreadful, but I can drive, read and live normally the thought of losing that was horrific to me EDIT- to clarify, my recent eye posts are a result of an eye injury when a piece of shrapnel that got under my contact lens and gouged my eye not Optic Neuritis / MS related
  • Lack of balance - Gone - .I posted my post treatment physio assessment back in year 1 with the pre-treatment one as a comparison. The lovely Marnie was staggered, it was like night and day I could balance with my eyes open and closed, no toppling sideways and needing railings to hang on to. Now I'm just as clumsy as I always was before MS :-) EDIT- The thyroid / tiredness does affect my balance to a certain degree, the more tired I am – the more I look like I’ve been on the Gin
  • Sensation loss - Gone - Before treatment the ONLY parts of me that actually had skin sensation was my right arm and from my boobs to the top of my head. Everything has now returned to normal with the exception of my thumb and first 2 fingers of my left hand and the palm bit that joins them. That bit of my hand feels permanently like a phone is vibrating against it - this wipes out the ability to actually feel any other sensation through the 'buzzing'. I have experimented while on holiday with what's best described as a 'herbal remedy' and when the buzzing stops the sensation in my left hand is perfectly normal. My old Neuro wasn't even convinced this is MS related to be honest and might just be from the neck injuries sustained in a car accident many many years ago. EDIT- The hand sensation loss remains, it’s been so long now that I suspect it will always be so. There’s also some loss in my left arm in the last few months (see recent posts about ‘the spine guy’ – I have a problem with my C7 vertebrae pushing a disc out of place as a result of ‘a degenerative bone disease’ ….. I’ve got arthritis which is to be expected my parents had the hereditary form so I wasn’t likely to escape that – I’m on the same treatment as the dog for this and it's not MS related - LOL
All things considered, this is all going according to plan, the thyroid problems whilst unwelcome were a known side effect and not unexpected. - MS wise things are going to plan.
Life and stuff for the last week have been good. The ‘spine guy’ as released me from treatment, the injection to the nerve cluster may take many months to show any result and it’s a just wait and see scenario. I’m now released from the Eye clinic, infection has gone completely and whilst the scarring in my left eye has left a ‘fuzzy bit’ (think looking through a bit of frosted bathroom glass) I can see light and shade through that bit so it’s not as bad as originally thought to be.

I’m picking up my new ‘seeing’ glasses this Saturday so I can get rid of these awful black framed things I’m currently wearing and replace them with the much prettier new prescription ones.
Gareth is planning a short trip ‘oop norf’ this weekend to go and see the last day of his friends ‘Hallilapse’ show. Given the recent issues with Winston and his anxiety I’m going to stay home with the dogs and just relax. This does mean that since it’s yet another bank holiday weekend here in the UK, I can add a couple of days wrapper around the weekend and have a 5 day break, with Gareth and I still getting a ‘weekend’ together just a little later than normal – the caveat for this is that Gareth can get leave approved – bit pointless me booking it if he can’t really.

Saturday night was good fun, we had company and watched the Eurovision song contest. Not a huge ‘drink-fest’ although we did have a go at the drinking game. I love that Iceland always sends artists who enjoy the opportunity to shout at the rest of Europe, the yodelling Australians on windscreen wipers were very strange and as always the UK entry was just disappointing. Madonna is neither aging well; or gracefully and her dancers with their ‘mini-protest’ went largely unnoticed.

EDIT - for those readers in Norway, rather liked your entrant, although the guy with the bald head reminded me a lot of the singer from Right Said Fred - I kept expecting him to sing 'I'm too sexy' every time the camera moved to him :-) cc
This week looms one more with plans afoot. Tuesday is a night out at a new start up holiday business that a friend of ours is running - that can only be traumatic for the savings account. Wednesday a night out with Terry for a meal and catch up. I should probably do the work thing too - unless the Euromillions comes up trumps (not Donald) tomorrow night. New glasses on Saturday, then the weekend when Gareth gets home (see previous caveat).

Not quite the glamourous and hectic lifestyle we’d like, but then we also have to consider Winston and his anxiety into the equation. He’s getting there, a little better each time but he’s got a long way to go. Amber is better each day, still wobbly but better.
All things considered, life in the Doust world is pretty awesome really, the sun is shining and life is good.

So here we go with the start of year 5 post Lemtrada continuing to kick arse and take numbers.
Last Friday’s blood results for your enjoyment – As usual there are some misbehaves and some wins. Lymphocytes are satisfactorily low, Thyroid is still within the normal range (barely)

It’s all good, hope you’re all enjoying the wins xxx

Monday 13 May 2019

The last post of YEAR 4 - sunshine, and stuff


Scores on the doors for things I wanted to achieve over the long weekend
Jobs around the house – FAIL
Relaxation – WIN
Eye Check-up – PARTIAL WIN
Dogs having lots of fun – WIN

The hospital went well yesterday, the Ophthalmologist has said I can now stop the drops and the gel stuff in my eye. She did say I can’t be signed off just yet, I have to go back again next week to check the infection hasn’t returned with me stopping the drops – she went to great lengths to explain that the infection in my eye was very severe and it’s imperative that they are sure the infection is gone (flesh eating eye thing sprung to mind when she was talking about it – EEEK).
I have an appointment next Sunday to go and have my eyes tested again to quantify just how much my prescription might have changed, plus since I can’t wear contacts any more, I’m going to need prescription sunglasses as well as just normal ‘seeing’ glasses (I can hear the savings account whimpering at the damage this is going to do to him)

The 4 day weekend was lovely, although I never did get round to doing the house stuff and Gareth forgot to mow the garden (you’re going be in trouble with doggy day care for that one Gareth)
We are trying something new with Winston to see if it will help with his separation anxiety, CBD Oil of all things – it’s supposed to be very effective for dog anxiety. Watch this space for progress updates.

There are going to be busy times coming up in the next few weeks, it’s also coming up on ‘that’ time of year again when it’s the anniversary of losing people and all that. I’m hoping the busy makes for it being more balanced this year.
We finally got round to watching season 1 of Call Of Duty over the weekend, binge watched season 1 in a single sitting. We always seem to get to these things long after the rest of the country has enjoyed watching them (I joined ‘Vera’ at season 8 earlier this year)

Dog news …
Amber is much better, she’s still very wobbly and can fall over, but she’s still completely mad for her food and loves to go off an ‘beagle’ so unless she’s unhappy we are okay with that.

Winston seems to be dealing with Ambers stroke far worse than she is. His separation anxiety has gone through the roof.  He shakes when he thinks we are going to leave the house and barks hysterically when we do. We are doing what we can to keep him in a calm state of mind, music playing when we do have to leave him, Adaptil Plug ins around the house (it smells like old people here) lavender oil on all the dogs collars and some CBD Oil as a food supplement.
So we are trying a new brand – yes – WE are, the dogs and I are now on simply CBD – the light formula arrived a few days ago and I figured since I have to remember for them – well I might just remember for me to so why not give it another try. It’s been a couple of days, it’s way too soon to tell if it will be effective for Winston or me, but his desire to vanquish anyone who comes to the house (particularly the postman) and the continual, never ending buzzing in my left hand – well they both seem a little reduced – could also be wishful thinking though so I will reserve my product review. Winston will stay on the light – my I’m pending a delivery of the blue formula (but sharing the dog dose in the interim J)

EDIT
Sorry – it’s now Monday of the next week – this is still open in a Word document on my laptop and I haven’t hit post yet – I’m a bad, bad blogger.

Well the weekend was lovely, BBQ on Sunday after I’d been and had my eye appointment – new glasses are on order and arriving on the 25th, there’s a small snafau with the sunglasses but that should be resolved later today with a phone call.
Saturday was a great chance to catch up with friends at the social event of the year – Jasper’s 3rd Birthday Party (we are so rock and roll)

Yesterday evening I had the surprise news yesterday evening (randomly through an obscure slating of someone’s dish  on Rate My Plate) that my lovely friend Terry is over from Australia so we are going to catch up over the next couple of weeks with him and hopefully also with his lovely other half when she gets here. It’s been 2 years since we saw them so it’s going to be lovely to catch up with them.

I’m back at the hospital tomorrow for what will hopefully be the last check up on my eye. Thursday I’m at Circle Hospital again for the follow-up appointment with ‘the spine guy’ – I’m not entirely convinced that the being stabbed in the neck thing did much at all overall, but I’ve pretty much got used to living with the slightly numb arm now so I’m not inclined to do anything more invasive to try and correct it.

Winston and I have been on our CBD rations for a week, he seems a little calmer (well the neighbours haven’t complained about him this week) he still shakes when we leave, but I think is barking has reduced. I wish I could just have a chat with him and find out what is triggering his anxiety though (if Dr Doolittle is reading this please get in touch) For me, well my left hand is still ‘buzzy’ but then it has been for years so that’s not new, I’m upping the dosage a little this week to see if that can help (as per the guidelines) will update if something wonderful happens.
As usual at this time of year, my thoughts are turning to my weight and doing something more proactive about getting some ‘chunk’ off. I’ve lost 2 stone doing the 16:8 fasting method, but I’m thinking it’s time to up the ante a little, lower the carb intake and double the reward. And if I’m brutally honest I’ve been quite rubbish with 16:8 in the last few weeks so I need to give it a bit of a boost anyway. We only have 3 months to go until we go on holiday so there’s my target – lose as much as I can by our holiday J

I have my first bloods of Year 5 on Friday. This is the final year of my mandatory monthly blood tests. It’s strange, but part of me isn’t comfortable with the thought of them stopping. As much as it’s a pain in the arse getting them done, there’s a level of comfort to be felt from getting them - I’m not entirely sure I want them to stop. The subconscious does strange things sometimes, I’ve been looking forward to them being over and done with and now I’m nervous that they will be over and done.
So that’s me for this week (and last – still sorry about that)

Hope everyone’s enjoying some sunshine and better days
xxx

Far too long between updates (again)

 So what have I been up to in my long absence and how have I been ? Well the Crohn's is under control and back to how it's always be...