Monday 24 June 2019

4 years + 1 month blood results

Another month and another set of blood results. Lymphocytes and TSH are both playing ball and looking pretty good. Monocytes and Neutrophils however are a different matter. I took a look at the history when I was loading in this month’s results and they’ve been on the high side for a year now and they’re getting worse not better. And yes I’ve done what I advise everyone not to and asked Dr Google (he’s a rubbish doctor) and scared the crap out of myself. I’m seeing the doctor next Monday morning to ask for some investigations to be triggered and look into it because I’m stressing about it now and that never makes things better. My trusty Excel Spreadsheet has been sent in advance so the results can all be seen in one place in the easy to read format.

The gardeners didn’t make it this weekend – they’re confirmed for Wednesday though so video will come soon.
In other news, Bob has an awesome cup holder now that has been custom made for him by a wonderful volunteer at a charity called Remap. The cup holder is epic – it attaches facing forwards from the front of the arm. It’s made of steel so it’s damn near indestructible and looks fantastic. I’ve sent a good size donation to them this morning to say thank you to them and help them to help other people who have ‘equipment needs’ to help manage their disabilities.

The weekend has been lovely with sunshine, dog walks and BBQ’s a little wine (but not too much) and plenty of sleep. Oxygen therapy on Saturday was definitely a good thing – I’m being good and going consistently right now, I’d got quite ‘flaky’ about it all in the last 12 months and missed a lot of weeks so I’ve been pushing myself to not miss it unless I have no choice.
Yesterday would have been my Mum’s birthday, today it’s 4 years since Ian’s funeral – FaceBook has kindly rubbed some salt in those wounds over the last couple of days (as if I was going to forget them) It’s been okay, it really has. The grief counselling I had last year and the balance I’ve found as a result has made such a difference to how I manage these occasions now.

We are still struggling to get dog care sorted for the last weekend of July for 24 hours – it’s a bit of a nightmare really, with school holidays everywhere and everyone is fully booked and has been for months. I’ve not given up yet, but I have to admit I’m starting to flap a bit about this challenge.
So anyway here are this month’s blood results for your enjoyment - thyroid seems to be being well behaved :-) xxx

Thursday 20 June 2019

Sleeping update

Sleep update for those who are interested.
After 5 days of actively trying to get better quality sleep I can report that I’m feeling really good. I have had a couple of evening ‘catnaps’ on the sofa, but I’ve had significantly less of them than has become ‘normal’ in recent times. So what have I changed ……

·        I’ve actively been making myself go to bed earlier (about 30 minutes)

·        I’ve also been foregoing a nightcap (I have already massively reduced m alcohol intake over the last few years

·        I’ve stopped going for a last cigarette before bed (yes sorry but I do still do the ‘bad thing’)

·        The central heating is switched off until my stingy ‘northern-ness’ insists it is switched back on

·        The bedroom window is open through the night to keep the room cool and make sure there is fresh air (it also helps vent out the collective dog farts emitted through the night)

·        I’m also not touching my phone or iPad later on in the evening to minimise the amount of ‘blue light’ I’m getting (in recent times they’ve  been my constant companions in the evening playing games and just mucking about on the internet)
I’ve slept really well, I have more energy and my brain feels more alive. I haven’t needed to use Bob this week at work. I feel calmer and more balanced.

I’m pretty sure it’s freaking Gareth out somewhat because I’m not being ‘normal’.  I’m declining a G&T and a before bed smoke and chat. I think he’s starting to regret buying the book – he’s not picked it up since I started reading it and I think he is wondering if I’m going to turn into a teetotal sleep zealot. For a relationship built on late night conversations fuelled by wine and a packet of Marlboro Gold this must seem a very strange and disturbing behaviour change. Perhaps I should have gradually led into it rather than doing everything at once.

Only other thing worth mentioning (and a potential cause of sleep loss) is that the gardener who came last Friday and quoted has gone ominously quiet, neither sending the written quote or confirming that they can do this weekend.  Bugger …. Back to the drawing board on that one I guess L

Monday 17 June 2019

4 years and 1 month - The power of sleep - Time for another experiment on me

Another week is now done and dusted. It’s been a ‘different’ one for want of a better description.
The notable high point was Gareth came home from work and brought me a massive bunch of roses on Friday with a bottle of Silent Pool Gin and a lovely big gin glass. He came home from work on Friday, said to stay home and cuddle the cat and took the dogs to the park. I found the flowers and gin in the kitchen 45 minutes later with a note propped up on the front simply saying ‘Happy Friday’

Low point – As I posted last week, Monday’s torrential rain brought down a massive tree / bush in the back garden. I had a gardener round on Friday to give us a quote to get rid of it, along with a load of other general ‘grooming’ work for the garden – the bill will be 4 figures to get all of the work done but I’ve seen sense and I’m going to have them come in for a couple of hours each month going forwards o keep on top of it. We actually dissected the thing yesterday in the sunshine. It’s really rewarding to be doing something so physical, but let’s be honest, I got  a bit carried away did far more than I should and properly broke myself as a result. It’s now down the side of the house waiting to be taken away either in the week if our friend can get his Landover and trailer down the lane or at the weekend by the gardeners.
I’ve also discovered a new reading experience – something completely out of the norm of my usual fiction diet of vampire, werewolf and big kids ‘action stories’. Gareth had bought the book ‘Why Do We Sleep’ by Matthew Walker. I had to buy my own copy as Gareth is actually reading a ‘real book’ one made of paper. Mine is the eBook variety, but I’ve also ordered the Audio Book version to listen while I’m working (I’m listening as I type) The concept of sleep as a prescription for human beings and it’s benefits for physical and mental health. There are some incredibly simple concepts about how and when sleep provides benefits to us.

I should add that whilst I often ‘nap’ on the sofa in the evening these days which I’ve put down to the side effects of my thyroid going on the frisk. I’m pretty rubbish at going to bed it’s usually around midnight on weeknights or at weekends. My alarm on weekdays goes off at 7am so I’m functioning on 7 hours sleep at the most. The research and studies in this book show that is the equivalent of losing a whole night’s sleep each week – which is pretty obvious really when you bear in mind that 8 hours a night is the recommended amount for general health and wellbeing.
At the risk of becoming an anorak about the subject, the Light NREM sleep,, Deep NREM sleep and REM sleep time and duration has proven to be fascinating. Explanations of why our behaviours and type of sleep have proven really fascinating. I’m going to make some changes to how I sleep and do a little ‘research’ on myself’ to see if it makes any changes. I’m thinking that work won’t be up for the idea that a 90 minute nap early afternoon will be beneficial for my overall daily productivity but I’ll certainly be going to bed earlier in the coming weeks to see if it has some beneficial effects.

I have my monthly bloods this Friday the first batch of year 5 – I’m still rather nervous at the idea that this is my last year of bloods – I’m going to not mention that it’s only for 5 years again at the doctors, just go in each month and see if anyone notices that it’s only supposed to be for 5 years.
Yesterday was Father’s Day here in the UK, always a little poignant but yesterday even more so as it was also a year since Gareth and I took our cat BamBam on his last journey a year ago in order for him to cross the Rainbow Bridge and join his old friend Gizmo again – I hope they’re having fun again together as well as ‘hunting’ – I put the hunting in quotes as they were both pretty talented at ‘hunting’ BBQ food and would through the summer bring home successfully ‘hunted’ Kebabs on sticks, bits of burger or just lumps of unidentifiable BBQ’d goodies. Anyway what I was getting round to (slowly) is that for father’s day the animals and I bought Gareth another bottle of the nice scotch that I got for his 40th birthday.

I’ve not done the video for YouTube yet – this is simply because it hasn’t stopped raining here in the UK all week. It’s been wet and windy and really quite crap. Today the weather seems to be better so if I can get Gareth to help I will have a crack at recording it tonight perhaps at the dog park if it’s nice and not too windy. Failing that it’s likely to be later this week or the weekend (I’m tempted to wait until the garden has been done and it’s prettier since I want to do it outside with the dogs wandering around and doing their thing) – I’m not going to welch on my promise – I promise J
Anyway that’s enough from me for now unless something exciting happens over the course of the week.

Stay well and try to get a good quality 8 hours sleep

Wednesday 12 June 2019

Over 200,000 views


And it's finally stopped raining here in Berkshire but it hasn't been without it's toll on the garden which you're going to see on the video since the tree / bush that's fallen over is quite likely to still be there - actually Gareth has said he will at least disect the thing into man-handleable chunks tonight - then it can be put down the side of the house until our lovely friend who has a LandRover, a trailer and a great big farm where he regularly burns his fallen shrubbery can get over to us next week.

Apart from that, the only other interesting thing is that I had to go back to the opticians last night and chose another frame for reading glasses because the prescription for my elderly (and somewhat damaged left eye) is so high that the 'rimless frame' simply can't hold that much weight .... EEEK - so a Dusty Pink Ghost Frame has now been chosen and hopefully they'll be here soon.

Anyway here you go, proof I'm not just making up stats about the blog being read and just sitting here whittering away at just you lovely reader.

Monday 10 June 2019

4 years 3 weeks - Big milestone for the blog and I'm going to 'Come Out'

I woke up this morning feeling good, I had energy, I felt upbeat and raring to go. I remembered my meds on time, jumped in the car and got into work. An hour and a half later and I feel like a flat tyre, someone has ‘popped’ me and let all my air out. I’m hoping that if I don’t do too much that I’ll ‘re-inflate’ later LOL
Last week was a whole lot of relaxing outside work, we had lovely meals and chilled and did very little really. Winston had another trip out to the pub and didn’t disgrace himself (much) although there was a lot of bribing him with food involved in keeping him calm and focused on us.

When I started writing this, Lemtrada was a newly approved treatment by NICE - I was only the 3rd to have treatment at Southampton once they were approved to administer it.
I had read so much by those who participated in the trials and kindly documented their experiences so those of us that followed could read the experiences of those incredibly brave people and understand what Lemtrada was and how it felt for them. It was reading those experiences, exchanging messages, emails and sometimes late night calls with those writers that made my mind up that Lemtrada was the right choice for me. I wasn’t going to give in quietly to the MonSter, I was going to war with it and well - I’m northern and ginger and I don’t fight fair so my MS should be afraid – very afraid.

The film ‘Pay It forward’ stuck in my head. The simple concept that in your life; do something good for 3 other people for no other reason than you can and ask them to also ‘pay it forward’ to 3 more. If my random ramblings could help just a few people to understand how the treatment had  been, why I chose it, and how life has been since then – well I was ‘paying it forward’ too.
It also seemed only right that having benefitted from those stories online that I should add to the documented experiences available, not just to be a recipient, but a participant too. I’m not a talented writer, grammatically I’m terrible, I am pretty crap a spell check and goodness knows I ramble a lot; but if it helped just one person – that was enough.

It never ceases to amaze me how what is effectively my online diary of life post Lemtrada and my strange slightly animal controlled life has been read by so many people around the world. This hardly a ‘right riveting read’ it’s just a diary of a  slightly crazy middle aged bird with MS.
At some point this week though the number of reads for the blog will pass 200,000 views worldwide.

I’m staggered, humbled and just a little bit intimidated at the thought.
I feel like I should throw a virtual ‘party’ and do something different to say thank you to those who have read this over the last 4 years.

I’m going to have a chat with Gareth tonight and see if he will help me with popping something up onto YouTube. Goodness knows I’m self-conscious about my weight; I hate cameras and it’s my idea of hell, but I should stop hiding behind a keyboard and ‘come out’.
If the British weather will co-operate perhaps something filmed in the garden with the dogs running around and a G&T on standby for courage.

Just writing that terrifies me ……. Time for me to ‘Find my brave’

Tuesday 4 June 2019

4 years 2 weeks - Summer is here and blonde me is back

So how’s the week been ….. well I still don’t have me new glasses – they were rejected again at ‘quality control’ (Seriously questioning the use of the word ‘quality’ now) apparently they are being made by their ‘in house’ people and are not working with the frame.
The new due date is Thursday this week and I’ve told them if they are arsed up a 3rd time then I expect them to bear the extra cost of sending them to the people who made my sunglasses who I hope can do the job properly. I suspect it’s something sinister in regard to my prescription and the style of the lenses – I’d be gutted after this long to be told ‘sorry but your eyes are just too rubbish to get lenses that thick in the little dainty frame you chose. Watch this space I guess.

Gareth’s new glasses had arrived yesterday ordered over 2 weeks later than mine – they look fantastic too. The benefits of being nowhere near as blind as me I guess J
I’m also now a very light blonde rather than the pretty dull shade of ‘mouse’ that I’ve been for a long time. Was gutted when I’d been here at work for an hour this morning and a total of ZERO people had noticed L (perhaps I should get them to get new glasses as wellJ)

Winston’s session with the trainer went well on Friday, he has ‘homework’ to do a few times a day gradually increasing the time away from him. She’s talked to the vet today to get Winston some ‘doggy zanax’ type medication to try to lower his stress levels – must remember to pop in and collect them on the way home tonight.
We are making good progress with Call Of Duty, only 2 series left to go. There’s also the long awaited Good Omens which I also need to sit down and watch – I first read the book over 20 years ago and it’s always been in my top 10 books, hilariously funny and it gets more funny each time I read it because I know what is coming and start chuckling before it even happens. I do hope the dramatisation is true to the book or I’ll be yelling at the TV correcting the dialogue J

I’m doing my annual ‘find someone to give the garden a damn good grooming’ routine again, the hedges and borders and weeding needs to be sorted out, I’m also going to ask for a regular monthly maintenance to be done rather than just a couple of times a year blitzing it.
Today I’m tired and wobbly – I didn’t sleep too well last night, but a good night tonight should put me back on track hopefully. I’m bimbling around the office in Bob and just getting on with stuff as you do – It’s been pointed out that I sound like a ‘drone flying around’ in the office LOL

Life is good, happy and content as it should be. Onwards and upwards everyone xxx

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