Monday, 9 October 2017

1y 19wks posr R2 - Building Work, Oxygen and looking back


A week of hard work and the construction for the conservatory replacement is almost complete. The inside, the plastering and electrics is the job for this week and then over the weekend I’m thinking painting and decorating done and the furniture put back and then we can have a rest. As gratifying as it is to do these things yourself, I’m honestly thinking can I really be arsed? Help local business and get a ‘man in’ to do it …... plus there’s the whole ‘we don’t actually own a ladder – let alone one tall enough to reach the top of the roof, so it’s not just painting and decorating it’s going and buying a ladder, making space in the shed to store the ladder afterwards ……. Just thinking about the whole ‘FAFF’ of it all makes me even more sure that paying someone else to do it is considerably better for my mental health.

Of course the plan above requires that someone awesome is available immediately for a days work … and can work over the weekend – the project manager in me suspects that this is a really big ask and unlikely to be realistic and I should have been planning this 6 weeks ago … FAIL.

Then there’s the ‘while you’re here’ factor …. That I also want the stairway repainted now that the stairs are done, and that the Painter and Decorator I’ve just found is also a carpenter, so perhaps he could also do the conversation of the space under the stairs into a small pantry with shelves – and if that’s done then the cupboard to the right of the fridge freezer can go and then I can have an American Style Fridge Freezer again … and there’s room down the side for a wine rack ….

AAARRGGHHHHH …..

So perhaps we should just paint the room ourselves because it will save us a small fortune.

I went for Oxygen Therapy on Saturday morning – my first session in 3 weeks as a result of life the world and everything. I relearnt the ‘make sure you go to the bathroom BEFORE the dive’ lesson again today. With 30 minutes to go realising you need the bathroom and are locked in is not right up there with my favourite experiences in life. I broke out in a cold sweat sitting there trying to think about anything other than the need for the loo – Candy Crush helped, dignity was maintained.

The weekend apart from Oxygen and getting a weekly shop done was dog walking and lots of relaxation. Just what we needed really, some time to relax and just enjoy ourselves.

I’m making plans to see ‘Boy’ again over the next couple of weeks, some dog walking I think and perhaps bowling and of course the obligatory McDonalds (bleugh) it will be nice to catch up and hopefully I will have enough energy to keep up this time. I’ve been taking my supplements and feel like I have more energy, but I guess the true test is trying to keep up with a teenager and dogs.

7 years ago today Murphy Cat went outside for the first time after coming to live with us and I had just finished a big implementation weekend and broken myself living on rubbish pizza, redbull and 2 ½ hours sleep in 48 hours.

4 years ago today we laid my mum to rest (thanks for that reminder Facebook)

3 years ago we returned from France and our ‘post diagnosis holiday’

2 years ago we had returned from France again after a week with Gareth’s parents

1 year ago we had returned from Portugal after the break-in where Gareth’s precious MacBook was stolen.

I’m not entirely sure where years 5 and 6 went, but for those of us who have a bit of a flaky memory, it the powers of Facebook to reconstruct a day in your life through the years is quite fun.

The one thing that strikes me is that all of these memories are about living, having fun, not one of them (well apart from Mum … that sucks) is negative or MS woes related. Perhaps whilst I may think MS has changed me into someone more positive, with more fight and determination, I think maybe that was always the way I am, I’m just more aware of it now.

And enough of that introspective nonsense ….

Here’s a cute picture that I absolutely love.

Tuesday, 3 October 2017

1 year 18 weeks Post R2 - Partys, Sadness and latest blood results


Another week done, and another exercise in awesomeness.

I’ve now completed my first whole week in my new job and still love it. I’ve even had a little overnight trip to a customer site which went well.

The weekend loomed and we had a chance to meet up with all our lovely friends together at David’s birthday celebrations. We have an upcoming night out for dinner at L’Ortolan at the end of the month and need to arrange a night for everyone over to ours for dinner within the next few weeks.

We discovered that Bills Restaurant in Reading is an amazing reason to get out of bed on a Sunday morning and go into town for breakfast – the Eggs Benedict was amazing and having seen the pancake stack that was ordered by the man on the table next to us I’m eager to try that next time.

This week will be exciting, the conservatory people are turning up to replace our ugly old green monster with a beautiful new sun room from tomorrow onwards for the rest of the week. It’s going to be a bit of a pain to live with it being a building site for the next 4 days but it will all be worth it in the end. They will be back for a few days next week to finish up the plastering and electrics but it’s going to be awesome when it’s done. We have some furniture and painting / chairs / lamps relocations to do tonight when we get home from work but it shouldn’t take long.

Today is a sad day for me, it’s been 4 years since I lost my Mum, it’s like a little action replay is running in my head hour by hour of this day 4 years ago. It’s horrible to be able to see it all unfolding in my memories as the day goes on. It took years for that to stop happening after we lost my Dad

A very random weekend of enjoying ourselves but not actually doing much on the productive front, I have an almost full laundry basket, the grass needs mowing (this is a ‘blue job’ so I only need to supervise) I think we deserved it, just some time to relax and enjoy doing nothing.

So here are the bloods, lymphocytes are reassuringly low, monocytes are a little high this month but I’ve not been taking my turmeric regularly so my arthritis is playing up a little and that’s to be expected back on them today


Monday, 25 September 2017

1 year 17 weeks post round 2. New job, gardening and running

So once again I owe you all a massive apology, this is 2 weeks in one again. In my defence I have started a new job (which I love) the learning curve is pretty vertical, but my mind is so very much enjoying the new things, new people and just the NEW of it all.

And they KNOW about me ... the MS stuff and they're fine with it since I'm such a kick arse MS warrior and you know what .... this helped .... they could see 2 1/2 years of positive and 'normal' so for that I'm eternally grateful.

We had friends over for a very lovely meal with the most amazing chocolate cake with cherry compote for dessert made by Kim. I did some shopping in preparation for my start last Wednesday (new office trousers and my first pair of jeans for about 2 years)

I'm off tomorrow for my first client visit with our technical genius with an overnight stay for the early start on Wednesday.

The allotment should be available to us soon so in preparation I did some gardening over the weekend and managed to pace myself well and not overdo things and break myself.

I even went for a short run whilst out with the dogs this week ....well when I say run .. it was more of a jog, and there were 3 noticeable walking bits in there too, but again - not broken, not even too winded

I went for my monthly bloods last Friday so I'm hoping to get the results tomorrow so I can publish them (pinky swear) I'm expecting them all to be really good well behaved numbers.

Life is a very happy place right now and I'm really enjoying it.

On that note (sorry short and rubbish update but I have to go and pack for tomorrow) I'll hopefully provide a less rubbish update tomorrow

Take care everyone.

Wednesday, 13 September 2017

Happy 3rd MS birthday week to me

Thanks to the powers of Facebook this week my memories have reminded me that 3 years ago today I was admitted to hospital for an emergency CT Scan, lumbar puncture and MRI.

The pain in my head was excruciating, I couldn't bear light and the world had pretty much faded to black and white. The hospital thought I was having / had a brain haemorrhage.

A short time later they were talking about 'shadows' in my brain, it could be haemorrhages, it could be the aftermath of a number of strokes, it could be tumours or it could be lesions as a result of Multiple Sclerosis - randomly Door number 4 was the one I was hoping it would be......

The others could all be fatal - MS would be shitty, but it wouldn't kill me, so please let it be Door 4.

3 years on the MS Bus and it's changed my life in so many ways and in a positive way I think mostly.


  • I'm a 'kinder' person than I was before I think - maybe.
  • I've kept record going and I'm not letting up, I think other than being Gareth's wife that's the longest I've 'applied myself fully' 
  • I've met so many people with MS, talked to them, 'de-medicalised' some of the information about Lemtrada 
  • I live for the now, I don't put off anything until tomorrow or another time losing my brother taught me the hard way that sometimes tomorrow doesn't come
  • I and less tolerant of  people who suck the life out of the world, negativity deliberate weakness or laziness or the endless pursuit of 'More'
  • I'm incredibly bitter that my family are all gone and I want to scream when people complain about the parents or siblings and the things they might say or do, I'd give everything I have for just 1 minute of them saying or doing the wrong thing, something, anything or nothing at all just to be there and not gone
  • I pay attention to what my body tells me these days, I don't just ignore things and hope they'll go away. I google and try to self diagnose, but I don't ignore things any more and hope that they'll just get better
  • I spend more time helping and doing things for others, something the old me never seemed to have the time for, now I make time.
Diagnosis can result in such emotional upheaval, anxiety and depression. It can be a terrifying transitional point in your life. For me being diagnosed seems to have resulted in reminding me of the strength of purpose and determination that my Dad and then my Mum faced their diagnosis. The fight they both put up and how proud it made me of them both. I won't let them down this has made me stronger, have more confidence in myself. A little more human than I was before. It's given me fight, or something to fight against. It probably doesn't hurt that my monstrous ego refuses to accept that anything other than victory against this nonsense is possible.

I think that I'm going to put a bottle of something fizzy in the fridge for us tonight to go with the home made mushroom risotto for dinner. 

I'm going to celebrate how far I have come, what I've achieved - getting my sight and walking back, keeping my positivity. I'm going celebrate 3 years of being in charge of my immune system and keeping the MonSter in a box. So happy 3rd year of no progress MS - fuck you very much 😈😈😈

Monday, 11 September 2017

1 year 15 weeks Post R2 – We’re getting an allotment



Yup it’s official we’re ‘old folk’ …... well not so much old, more the good life, stopping to go and pick fresh produce for dinner that evening, eating lots of lovely fresh fruit and vegetables. The fresh air and sunshine …. Okay so I’m painting the rose-tinted glasses view of it, weeding, digging, planting and harvesting all come with their associated use of lots of energy, but it can really only be a good thing in my opinion, and hey if it doesn’t work out it’s £55 for the year so it’s hardly financial ruin. Roll on the end of September when we can take possession of it.

Gareth and I have had a lovely long weekend together as he’s using up the enormous amount of annual leave he has remaining (bad Tracy for not taking him on holiday).

After increasing my intake of Iron and Vitamin B, that strange inexplicable tiredness in my legs that I’d been having is well on the way back to normal again. Although I usually have nothing nice to say about Dr Google, on this occasion he’s actually been quite a help.

Since it’s also possible that all this could be MS related I had a quick chat with The Lovely Margaret, my MS nurse this week to give her some updates on my general state of affairs, also to ask for a new MRI to be scheduled and an appointment with a Neuro (mine is on long term medical leave – so I need a sub) – it will be interesting to see who I get – although I have expressed my preference J.

Life continues in much the same manner as always, slightly strange, full of love, antics from the puppy dogs and a liberal application of wine at the weekend. There are some very interesting things on the horizon and the world is good.


I hope everyone is strong and taking care of themselves xxx

Wednesday, 6 September 2017

You've GOT to read this

This is the story of a wonderful lady called Charly who has also had Lemtrada. She's an absolute inspiration to me with everything she has achieved since she had the treatments. Charly had been diagnosed far longer than me, and was far more disabled than me when she started treatment and she is a grandmother !!!!!!
Charly has also had 3 rounds of Lemtrada - something she always predicted she might need from the start.
This lady awes and inspires me with every post she makes, she is strong and tenacious and her positivity is just amazing. I internet love her to bits and will be making a trip to drink wine and get my nails done with her next time I'm on US soil.

https://cbarnard116.wixsite.com/mswp

1 year 14 weeks Post R2 - Blood results time again

Welcome to Autumn again, days getting shorter, and that time when you're holding out on not putting the heating back on just yet.
I must admit though the pyromaniac in me is really looking forwards to having the log burner going again in the lounge and snuggling up on the sofa under a blanket with Gareth and the dogs in the evening.
So my blood results are back .... my lymphocytes are still doing the yo-yo thing with a slight drop this month - the last 4 months have been all over the place - not that I'm complaining, as far as I'm concerned the less of the little buggers there are the happier my MS Free life remains ... but look at this ...




all over the place ..... but relatively low so that works.




The other interesting thing on my bloods is that the MCH value is really high this month, it'd popped over the top level for the first time. A quick google search of what this could mean came back with macrocytic anemia which interestingly lists as one of it's symptoms
  • Unexplained fatigue
Given that I ended up having to use a mobility scooter last weekend when I took Boy to the Hawk Observancy for the later part of the day and the week before at the Supermarket when the battery died I can categorically say yes I've had some unexplained tiredness of late in my legs and I think I've just discovered why. So according to the information I've found this condition can be caused by deficient levels of vitamin B-12 or folic acid in the body; nutrients found in foods like fish, liver, green leafy vegetables and fortified cereals. These contribute to efficient red blood cell production and may be lacking in your diet..... so I guess dinner tonight will involve lots of leafy greens, and there will be a lot more fish in my diet going forwards - I don't know what a fortified cereal is, but I'm pretty sure that and liver will not be in my near future.

My home office is working out beautifully for me along with my lovely comfy new office chair, I'm even remembering why I loved having a MacBook before because the Mac desktop is so much more user friendly (one you remember how to use it and where they hide the @ button - the search for the pound sign is ongoing)

Life for me as always remains awesome, weird and blissfully not MS'y at all. Wishing the same to you all