Tuesday 28 November 2017

18 months after round 2 - dodgy legs

It’s been a weekend of parts, had a long leisurely coffee with the Lovely Amanda on Saturday morning talking about life the world and everything and MS, we’re both Lemmies and have shared experiences which needed to be explored.

Quick bit of shopping afterwards and it became quite apparent that despite not having overdone things too much I was having a ‘dodgy left leg day’ my knee doing that ‘double pop thing’ that sometimes results in me tipping sideways and ending up on the floor. It took some hunting but I managed to locate my walking stick (functional black folding variety) in order to go and do the shopping at Waitrose in Basingstoke. A quick trip to the customer service desk to see if they had a scooter and I left feeling rather hurt and angry. Waitrose don’t even have self-propelled chairs let alone scooters – they will however give you a member of staff to ‘push you round the store’ or ‘assisted shopping’ as they refer to it.

Am I alone on the ‘assisted shopping’ front it that this really offends me. I don’t need ‘help’ to shop I just needed a mobility device to be able to help myself (not in the pinching stuff way) perhaps it’s just me I want to be independent even if I do occasionally need a little assistance in order to do so.

Dodgy leg continued all weekend and into this week.

On Sunday I woke with an urge to cook and preserve (the ‘cooking’ part had technically started the day before when I unrolled a pork belly roast, slashed it up a little inside, put some garlic butter into the cuts, some finely diced apple batons and a nice handful of finely chopped fresh sage which I then re-tied and left in the fridge for 24 hours to infuse itself) After a long walk across the carpark to get into the store, despite being ‘with stick’ I very nearly ended up on my arse in the doorway of Morrisons – Gareth caught me before I hit the floor - at that point had to resort to a mobility scooter.

Gareth has wisely pointed out that whilst I might not want one – for the times when this happens – I need to apply for a Blue Badge – I don’t HAVE to use it but I NEED it there for when I have no choice but to use it.  He’s a wise man and he’s right on this – but please don’t tell him I said that 😊

Monday morning and I thought my leg was better but wisely the stick remained in the car – mortifying mid-morning to have to ask a colleague would they please go out and get it for me so I could get to the bathroom

It’s Tuesday now – it’s not failed yet so perhaps the blip is done for a while ? I live in hope.

I have however applied for the blue badge

Had a call this morning booking me in for my pre-neuro MRI December 15th at 19:30pm in Southampton … guess what - the message it needs to be full head and spine with and without contrast only ‘partially’ got there.  They know it’s a head and spine – they don’t have the request for with and without contrast.

My MS nurse is on the case 😊 The small ‘issuette’ with this is that it ‘usually’ takes 2 weeks for the results to be made ready for the neuro ….now the simple maths of this matter is 27-15=12 – which doesn’t make 2 weeks at all and with 2 weekends and Christmas day and boxing day in the mix that effectively leaves 5 working days only ……. Chances of the results making it to the neuro on time? Pretty close to bugger all I figure

Plans for the weekend are blissfully free, next week I’ve got a couple of nights in deepest darkest Wales near where Aunt Kathy lives so we are going to have dinner together.

Christmas presents purchased so far – 0

Decorations put up – 0

Christmas plans derailed – 1

 So all about standard for this time of year I guess 😊

Thursday 23 November 2017

Post R2 18 months blood results

So here they are the scores on the doors for my 'half way through the blood tests' anniversary.

As I'm getting over the vile flu like thing Gareth gave me the lymphocytes have all jumped off the metaphorical cliff like lemmings and now show where they would naturally have gotten to without last months 'infection fighting' spike.

The thyroid is behaving itself and being a good thyroid still (threatening it and depriving it of vast quantities of green vegetables seems to be doing the trick nicely.

My monocytes have been a little higher than required for the last 3 months, but that could be a before / during / after of the flu thing related I guess next month will be more telling.

It's been a bit of a faff, but it would appear getting my MRI booked in is actually happening now (allegedly in time for the results to be available for December 27th when I see the Neuro) - a little alarming that I got a phone call asking 'which sort of MRI' but then I do know which ones I've had in the past so I guess that makes sense.

I know I keep banging on about how important it is to 'know your MS and your treatment as well as if not better than your care providers' but that phone call meant that they didn't have to go hunting through a whole load of previous MRI's trying to work out what types they were and why they were done. Plus at least now I know they're doing the lot in one go.

so here they are this months 'scores on the doors for bloods' 

Avid blood watchers will notice there's a new one appeared 'Serum Total Protein' - I have no idea what this is but it's now there for the next 2 1/2 years of vampiric activity so enjoy.

In the interim I await the MRI and Neuro, my plans are almost in place no matter what the outcome and it will all be good.

Keep kicking MS up the arse every day
Much love xx

Monday 20 November 2017

1yr 25wks post R2 - New MRI needed and new Nuro to 'train'

Month 30 stabbing was completed last week by the nurse at my GP’s surgery. A one stab wonder as always (although I have bruising this time)

A week of work and planning for me this week. The planning was for the expected over-use of energy during the weekend. The paining of the new sun room (sounds better than ex-conservatory) so that we can actually get the furniture back in there and get our house back. A minimum of 2 coats required – probably 3 it was going to take a lot of the weekend.

Gareth took the ‘up top’ bits, the ceiling and ladders part – given that I’m pretty clumsy at the best of times, which left me with ‘down low’ all those fiddly skirting board, round the plugs under the window sills parts. We got 2 coats done over the weekend and now the plaster is covered it’s looking pretty fantastic, but oh man it was hard work. I’ve slept for England when I’ve sat down to rest. Literally sit down, lights out, wake up at bed time then go sleep some more.

It’s always been this way when I’ over do things and expend too many ‘spoons’ doing stuff. On my more prepared endeavours I planned in advance for my ‘downtime’ afterwards and this was a well planned event. I’m back in work this morning feeling human even if I did sleep away the bits of the weekend that I wasn’t sleeping in.

I also now know just how terribly out of shape I have become and need to address this and my weight with a heightened sense of priority. So much so that waiting for new year isn’t an option – I’ve started this morning and want to have lost a significant amount before Christmas or I won’t be letting myself have time off during Christmas.

Today is the actual 1 year and 6 month anniversary of completing Round 2 (may 18/19/20 2016) (yes I know I’m very odd that I keep this level of information in my head) I was plumbed in with steroids flowing at this time and the final shot of the good stuff was so close to being done. It’s quite a fond memory really but then most of my post treatment memories are good ones.

I have an appointment on December 27th with a neurologist I’ve not seen before and am currently chasing down the MRI I need before the appointment. I’m moderately concerned with some changes of late that there might be something going on that I need to know about. It might just be my weight and unfitness, I can deal with those, but rather than worry myself into a wreck I want the alternative ruled out or confirmed.

So what’s changed ?

·        I’ve been having some minor but quite annoying spasticity in my lower legs. I’ve seen a physio and been given some excercises, and if I’m brutally honest I’ve not been doing the exercise anywhere near as often as I should. When I’m watching TV in the evenings with my legs stretched out, my left lege in particular has started making ‘ankle jumps’ where my foot starts bouncing around randomly pulling back and releasing repeatedly for a few seconds.

·        The bathroom thing …… it’s been getting worse again to the point I’ve requested an appointment with the team to see if there’s anything that can be done (this could also be a ‘middle aged’ thing but I want it ruled in or out as such as quickly as possible.

There is so much I can do if something has changed, I’m not worried if I need to do more, just proactive enough that I’m not putting it off or sticking my head up my ass in denial and hoping it goes away on its own.

If there is activity then it will be time to plan a new battle, another round of Lemtrada hopefully. If not then there’s Ocrevus, HCST Cladibrabine, decisions decisions. It’s all a bit moot until the MRI and Neurologist review - I might just be imagining things, feeling a bit old, fat and creaky and trying to blame MS for it. I’m also a little nervous about having to get a new neurologist trained up to ‘manage me’ …… I know I’m a little difficult, opinionated and downright pig headed with my opinion of how to deal with this MS nonsense.

I’m hoping for those ‘half way to the end of the blood test regime’ results today after Friday’s stabbing. I declined the urine test when I was there, TURN AWAY NOW GENTLEMEN – it’ TOTM, and as middle aged women tend to this month is an absolute horror – I’m bleeding like a stuck pig and pretty much can’t guarantee any kind of sample that won’t be horribly contaminated with ‘proteins’

All in all life remains awesome, I’ve got this shizzle under control and everything is shiney.

Take care of yourselves xx

Thursday 9 November 2017

1y 23 Wks Post R2 – Fireworks are evil - life is good

The week was work, rest and work as usual. Still loving the new job very much.

**Random Rant Alert** - *non MS*

Every night this week has been sitting in the lounge with the TV on unbearably loud each cuddling terrified puppy dogs. There simply isn’t a way we’ve found to ever stop the dogs being terrified of fireworks.

I know it makes me sound like a grumpy old mare, but bonfire night is November 5th, so the organised and disorganised displays on the 31st (Halloween) the 1st (2nd Halloween for midweek Our turn with the kids night) the 2nd  (it’s nearly the weekend lets set some off when we get back from  the pub night) the 3rd (It’s Friday let’s get this over and done with so we get the weekend to ourselves night) and the 4th (Saturday is more convenient for me, I don’t have to get up for work the next day night) drive me slightly nuts. Bonfire night is the 5th not whatever day in the general vicinity of a date is more ‘convenient’

Amber dog simply shakes and shakes uncontrollably, she’s glued to us huddled against us because she’s so terrified and when they go off she just whimpers - any firework it doesn’t have to be the big booming ones, just the whoosh of one going up in the air, and then Winston who’s protecting her runs around barking to let us know she’s terrified (we knew she’s in our lap) Nothing works to reduce the fear level, not the air diffusers, turning the volume up, cuddles, reassuring tones ….nothing can lessen her fear

It makes me angry that other people get to terrorise my pets for days and days on end and apart from being there to comfort them, there is nothing I can do to make it better for them.

I know I’m an evil fun kill Nazi but I’d love to see people have to apply for and pay for licence in order to set off fireworks at a specific time and place. Fines for those who don’t have licences and chose to set them off randomly or at unsociable hours.  Oh and perhaps part of the punishment could be  making them set fire to £10 notes one by one with matches  up to the value of the fireworks 😊


*end rant*

It really has been very quiet and uneventful all things considered.

There is something exciting (well it’s exciting to me – middle aged person that I am) …. We bought new pillows for our bed …… yes, I find this exciting - first world problems - and all that.

Stick with me here …. They are Bamboo pillows ….. and in no way ‘stick like’ – They’re light and breathable and not too warm, not too hard, not too soft, not too high or too squishy, as Goldilocks said, ‘they are JUST RIGHT’ I’ve had 5 of the best night’s sleep I’ve had in a long time since they were installed on the bed and at £28 per pillow rather than the £89 per pillow we have previously paid for Tempur ones they’re an absolute bargain.

 A little more weeding was done over the weekend at the allotment just to try and get it ready for winter.

I’m even vaguely considering preparation for the ‘C-Word’ now that it’s the next thing on the horizon. Time to hump the Amazon Prime Free Delivery for all that it’s worth 😊

I’m randomly quite nervous / excited about a week on Friday. It will be monthly bloods time, but it’s a ‘BIG ONE’ this time – it will officially be 1 ½ years since Round 2 ….. it’s officially HALF WAY in the 5 years of monthly blood tests for lemmies. It feels like a ‘big birthday’ a 40th or maybe even a 50th, one of those that denotes you’ve made it up the hill of life to the summit the hard work is behind you, now you can sit down on your sled, slide down the other side with a drink in one hand and big fat celebratory cigar in the other and your hair on fire as you slide into the King of Hell’s reception room plonk yourself down on his lap saying ‘hi honey I’m hoooooooome – now what’s the WiFi Key?’ (well that’s how I see it in my head – but I think we’ve already established that what goes on in there can hardly be classed as ‘normal’)

Last but not least I guess I had better talk to Gareth about doing the VLOG thing in time for the 1 Half-way-iversary through the blood tests milestone.

I guess that will be done over the course of this weekend or next – sadly I don’t think I will manage to lose 2 stone, turn back 15 years of aging with a miracle one use face cream and get an awesome tan between now and then so ….

I’m thinking perhaps something filmed in the lounge with the dog-beasts in attendance, a cup of coffee, a bit of a recap of the story so far, random waffle …. And now my brain has left the building – I have no idea what to say at all …. It’s all blank …. ARGHHHH

That’s all

I’ll think of something – goodness knows I’ve been sitting in here for 2 ½ years blathering at myself and goodness knows I’ve not run out of stuff to blather about yet 😊

Stay well, strong and awesome ladies and gents xxx

Yikes 2 posts in a month

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