Monday, 29 January 2018

Week whatever post R2 - Heartbroken and devastated again




I would put an update of what happened from last weeks post to the weekend, but I honestly can’t remember a thing about last week or what happened before Saturday morning. This is not MS, and no for regular readers, I wasn’t drunk or hung over.

On Saturday my world disintegrated into a million pieces for the 4th time. I had a message to call a mutual friend about my ‘acquired’ brother Arthur.

Athur has been part of my life for nearly 20 years, we met on my 2nd day in a new job when I inadvertently set off all the security alarms on the office firewalls by making a typo trying to load up the MSN.com search engine (20 years ago remember – that was state of the art then) For those who haven’t accidentally typed MAN.com …. Well I wouldn’t recommend doing this in the office ….. about 400 pop up windows opened with absolutely the most inappropriate images that should never be viewed on a piece of work equipment.

I was desperately trying to Alt-F4 the pop ups closed when he ran up the stairs to ‘catch the perv at it’ he crashed through the door behind me to find a red faced female in a full blown panic hitting the buttons faster than a kid playing the 100 meters in the ‘Daley Thompson’s Decathlon’ game sweating and swearing and mortified.

That was our introduction, me wanting the earth to open up and swallow me whole and him almost  wetting himself he was laughing so hard at my misfortune – it set the tone really, he loved to tease me and wind me up, getting me to blush and be speechless at the same time was like every badge of achievement rolled into one. He basically decided that I’d ‘Do’ as a little sister and that was just the way it would be, I never really had a choice in the matter.

He was there for me through umpteen relationship breakups before he finally pronounced that ‘Gareth wasn’t bad, he’d do’ Mostly I think because at the time Gareth was still in the Army so he had ‘forces points’ in his favour. It certainly meant at the end of the evening when it was ‘lasties’ time Gareth always got invited for the aged single malt with the ‘vets’ …… me …. Well I was relegated to ‘dinky’ status …. (army wife)

There is a lot we don’t know yet about what happened, I guess that will come in time with the coroners report / inquest results but he was found in the river on Saturday morning.

Once again my world is in a million pieces, my heart hurts so much that it hurts to breathe. I can’t wrap my head around how something like this could have happened to this magnificent, brilliant, brave, geeky, completely daft bugger.

I’ve spent a lot of time contacting people trying to get ahead of when he name is released, spoken to people all over the world, people I’ve not seen or spoken to in many years and I’ve cried so many tears.

Other stuff happened as well, Gareth’s parents came for the weekend and it was lovely to see them, I did Tomahawk for dinner – everyone loved it.

I don’t really know what else to say, it’s all gone horribly wrong.

Tuesday, 23 January 2018

1y 36wk's port R2 - January Blood Results


For those of a ‘certain age’ you might remember an old console game called ‘Worms Armageddon’ – completely silly but when the Worms won they did a little dance and all sang ‘SUCCESS’ – this pretty much sums up my feelings about not having to take another long road trip last week up to Blackpool 😊

The week after my last post became quiet and serene and much more sensible. (well as sensible as it gets in my world around a full-time job, the demands of the pets and of course my husband.

I saw my Doctor on Thursday and picked up prescriptions for some bits and bats that were running low, I also asked to be referred to a new Neurologist within the Berkshire team (I gave him the name of the one that I wanted to be referred to). After that the lovely Ron and a few more holes in me from the acupuncture needles to work on the Psoas muscle (next session is hopefully the last one as I’m pretty much mended now). Friday was ‘stabbing day’ and the one stab wonder Phlebotomist did her usual fantastic job at harvesting my blood, although despite sitting on the loo for an exceedingly long time I failed to pee and have yet to drop in a ‘sample’ to be sent off.

The weekend really was a whole lot of not doing much, a quick trip to get gassed at BMSTC Saturday lunch time and the weekly food shop and when a whole lot of just loafing around reading books and binge watching Blacklist, dog walks and recreating James Martins Shin of Beef Stew with dumplings – which was pretty epic if I do say so myself 😊

A couple of days in the office and tomorrow I’m off on the train to Manchester for a day trip. Apart from the odd trip into London with Gareth which doesn’t really count, I think its been 5 years since I took a proper train journey. £172 for a return journey is absolute bloody daylight robbery in my opinion – especially when it doesn’t involve anything to eat or drink and WiFi is an extra fee on top – absolute thievery – and also why public transport is never a preferred method of travel in the UK – it is just far too cost prohibitive. I could rent a hire car, fill it with fuel and book a night in a hotel for less than that

I’ll step right down off that soap box …

Poor Gareth gets the wonderful job of dropping me at the station for 06:00 tomorrow – he says he’s texted me to say he’s very excited about this – it’s amazing how text can convey such deep and damning sarcasm 😊

Ohh back to trains (briefly – I promise) by the power of Facebook it’s exactly 2 years today since I used a train – Gareth and I went into London to see Hangmen at the theatre and had the most amazing meal at Steak & Co before the show – we absolutely need to do this again soon.

So coming up …. Well lots of lovely plan free weekends that I can fill with loveliness, like a long weekend in Normandy, the afore mentioned trip into the city for lovely stone cooked steaks. I really just need to get round to sorting that out – and therein lies the problem when it comes to actually making plans like this the project manager disappears and the flaky bint replaces her, I forget (not MS just middle age blondeness) and things just don’t seem to get planned.

Must try harder 😊

And for your enjoyment here we go January blood results - time to check up on the scores on the doors that become so important to us all. TSH came back late and the doctors have the results but they're not allowed to read them down the phone to me until a doctor I've never seen has reviewed them LOL .... mini update tomorrow too I guess 😊


Happy week ladies and gentlemen xx

Wednesday, 17 January 2018

1y 35wks post R2 - road trips galore


A bit late posting this weeks update, I’ve been ‘oop Norf in Lancashire at a customer site with work and as usual couldn’t face trying to construct an update on an iPad.

I’ve done nearly 450 miles in the last couple of days in a hire car and the fix that Ron has done for me at BMSTC on the spasming psoas muscle is still holding – 28 days now without needing to use sticks to walk 😊

The lovely Nino came (he brought his Dad this time) and replaced all our broken down old fence last week with a beautiful new windproof one for those in the Reading / Berkshire area – I cannot recommend Woodley Fencing And Gardening Services highly enough 😊

The weekend was somewhat disrupted, the thing that I thought was ‘shaken free’ in Oxygen Therapy turned out to be a little viral infection which hung around all week. The trip to the doctor on Monday night was ‘interesting’ she asked what I ‘wanted’ – I think expecting me to just ask for a big dose of antibiotics or something, all I could say was ‘check me over and tell me if I ‘need’ anything other than the over the counter cold meds I’m taking …. Apparently, I’m a bit of an ‘odd duck’ in her experience of people with chronic illness in that I’m very anti medication unless I have no choice. Turned out I just needed a couple of days working from home on the comfy couch and lots of lovely LemSip Max to do the trick with it.

I had a couple of road trips over the weekend, one to see a friend of mine in hospital after an accident, and then a trip out to recover his car for him. Fortunately, he’s now sprung from hospital and life is getting back to normal.

MS wise everything is pleasantly ‘normal’ no symptoms, no problems – just the way a life as a Lemmie should be – boringly normal 😊

So plans for this week (what’s left of it) I ‘might’ have another road trip on Friday to Blackpool for work (and I’ve not yet managed to find a way to do it remotely – but I’m working on it 😊)

The rest of the week and the weekend currently looks blissfully clear of any commitment other than my usual dog walking times at K9 Pleasure Park and oxygen therapy at BMSTC (assuming they’ll let me in the building – the slightest look like you’re coughing or sniffling and they’re not terribly happy for you to be there in case you spread it around – reasonable enough in my opinion)

Thursday I’m at the doctors first thing to get some more migraine medication (I absolutely love that sumatriptan can sort a migraine out in 20 minutes, I’m also low on Co-Proxamol which honestly for severe pain is the only thing that works on me that doesn’t send me completely loopy) plus I want to talk about changing to a new Neurologist within the Berkshire area so I don’t have to deal with Hampshire and Southampton being so very rubbish.

Friday is ‘stabbing day’ time for my monthly blood and pee tests again, time to see how those lymphocytes are doing (could be a significant increase if infection fighting is still in progress – or a significant drop if it’s all done and they’ve all committed mass suicide again because their work is done) It will also show how if there is still something ‘funky’ going on with the Neutrophils which have been slowly rising for the last few months. Nobody else seems to be worried about them rising, so for now I’m not going to worry myself overly about it either despite foolishly googling possible causes of elevated Neutrophils.

That’s all for now folks, I will be back to wibble at you some more next week

Stay tough xx

Monday, 8 January 2018

R2, M19 New Year, New Fence panels again

 Good morning all. Hope you had a great weekend.

Weekly update time from not so sunny Berkshire.

I had my second session last Wednesday with the lovely Ron at BMSTC to get myself acupunctured again to resolve the dodgy psoas muscle that’s been impacting on my leg and walking. It’s really odd to get stabbed a bit in strange places and feel my leg getting better. I can straighten it fully now, and I’ve not actually had to use a stick since before Christmas.
I got the written report from my new neuro over the weekend. It seems fairly comprehensive although according to her I’m hopeful to start ‘dancing’ again soon – I’m not entirely sure who she had that conversation with but it certainly wasn’t me …..

I’ve also had to contact Southampton regarding my next appointment with the new Neuro which clearly states 6 months review but the appointment they sent through is a 12 month one – 27th of December 2018 – sadly with the state of how things seem to be running at Southampton these days this is more ‘par for the course’ than an exception to the rule. It all seems to be a complete and utter mess down there right now with the administration being in disarray in regard to appointments, schedules and management of the service in general.
NOTE: - They’ve advised that DECEMBER is their next available appointments and that they’ll ‘put a note on my file to TRY to bring it forward – strangely they can NOT confirm in writing they will do this. I’m seeing the doctor on the 18th, time to be moved to a health authority that is not in disarray.

I had a proper compressed oxygen therapy dive at BMSTC on Saturday for the first time in ages, whilst it takes so much longer out of the day to do a compressed dive, it really is so much more effective than sitting in the chair. I felt great when I came out, human, alive and on top of the world. It seems to have shaken something lose in my head though I’m now very sniffy and sneezing for England. I don’t feel unwell, just got a very red nose of all the blowing.
NOTE: - 3 hours later, I’m now seeing the doctor at 16:50 because I’m feeling quite rough now if I’m honest.
Gareth now has an assigned IV and had an afternoon out with his ‘boy’ on Saturday, it seemed to go well, unfortunately as with my ‘boy’ he’s a Liverpool fan so shockingly poor taste in team choice in both boys 😊
The time is coming nearer for our friend to move away up to Scotland for her new job, we are going to miss both her and Jakey-Dog when they go. Leaving drinkies are happening next weekend in Reading which I fully expect might get a bit ‘messy’ 😊

We never got around to going up to the allotment over the weekend, must sort that out as we have potatoes to plant so we have yummy Mayan Gold’s through the summer to go with the national surplus of Onion and Garlic we’ve already put in. Hopefully this coming weekend the weather will be better so we can get that done.
Might be taking a trip up to Lancashire later this week or early next for a work meeting so another small ‘lem-girl on tour’ event – I really do need to get to more glamourous places – perhaps Florida, the Amalfi Coast, Tuscany, basically anywhere warm and sunny!!! I know that’s not really a common thing for someone with MS to hope for, but I believe I’ve mentioned before that I’m probably part lizard or snake because I’m quite happy to be warm and cosy pretty much all of the time.
We lost 4 fence posts and 5 panels when Eleanor blew through last week on the outside fencing for the garden. That's a big ouch that we really could have done without in January. The lovely Nino is coming Wednesday / Thursday this week to rip it all out and start again with new fencing and posts all the way round the outside stretch of garden pathway. That will bring our spending over the lst 2.5 years on the house that needed nothing doing to it, to nearly £25k - bloody ouch. Just as well I was made redundant really 😊

Life remains awesome as always, hope everyone is taking care of themselves xx



Tuesday, 2 January 2018

R2 M19 + 3 Wks - Neuro Update + Christmas and New Year




ARGH …. So sorry for being rubbish over Christmas and New Year, my only defence is that with access only to an iPad and Phone I simply didn’t have sufficient self loathing that I was willing to put myself through trying to make a substantial post without the use of a keyboard.

So first things first (although it’s not in sequence) lets deal with the outcome of the MRI and my meeting with new Neurologist (since that’s the reason people are reading this and not just because my weird little life is just that exciting)

The new Neuro seems nice, it’s going to take a long time for me to forgive that she’s not Dr C (but that’s really not her fault) she gave me a bit an MS – MOT and confirmed that I’m really not in bad nic. We also went through the MRI slices and it’s good news …..

I’ve been confirmed as NEDA again for the 3rd year running

I’m so pleased to get this. I’ve been guilty of the one thing I warn people we shouldn’t do. That problem with my leg, I assumed it was activity and MS and didn’t look for other possibilities first.

Rookie mistake

I’m people first not MS first I should have looked at it dispassionately and investigated properly, I could have saved myself a few months of discomfort if I’d just followed my own rules. I guess I needed to learn that lesson once again. I have another appointment on Wednesday with the lovely Ron to apply another fix to my psoas muscle which is in spasm – which to be fair has been much better over the Christmas and New Year period (right up to yesterday when I did far too much walking and Gareth commented that he could see it was giving my a problem because I had slowed down so much)

Christmas in Wales with Aunty Kathy was lovely, far too much food and not too much to drink and it was lovely and relaxing – just what we needed. Gareth went up to Halifax to see his family while I came back down for the Neuro appointment (really sad that I missed out on that, but his Mum and Dad are coming to visit this weekend so I can make up for it a little)

On the way back from Wales I discovered that the diamond in my engagement ring had somehow fallen out – nowhere to be found – well to be honest apart from Aunty Kathy checking that it wasn’t in the bedding somewhere in Wales, looking was a little ‘moot’ – it could have been down a sink, down the shower, in Machynellth, Aberystwyth, on the Estuary where we walked the dogs, somewhere between there and Solihull in the West Midlands at a service station where I washed my hands and put screen-wash in the car – the locations were endless. I was heartbroken, cried most of the way home from Solihull to Berkshire.

I pulled on my big girl pants then and pulled myself together. It’s horrible and heart breaking and annoying but it really wasn’t the end of the world in the big scheme of things and far worse things happen. Besides on a bright note a ‘sub’ in the Sales was a very ‘do-able’ thing. I’m now sporting a rather lovely, very shiny new engagement ring which is stunning and was half price in the sale 😊

New Year was quiet, Gareth and I and some very fine English Sparkling wine (we decided to be a little different this year and leave the Pol Roger Champagne for another time) a beautiful red wine to go with absolutely the best homemade chilli con carne I have ever made and the night rounded off ‘old-skool’ with some Sing-Star on the PlayStation with Snow Patrol’s Chasing Cars as the last song as it was our first dance at our wedding.

I have high hopes for 2018. It’s started wonderfully and I hope it keeps on getting better and better.

So to you all, I send my best wishes to you.

My New Years toast to you all is …..

In 2018 I wish you Good Health, Happiness, Family & Friends – the ONLY things that really matter

Much love xxxx