Wednesday 20 December 2017

R2+19m+1wk - hoping the physio can 'fix me'

Bloods on Friday were gloriously uneventful, lovely nurse as usual was a 1 stab wonder I managed to provide a pee sample this month which was not ‘contaminated’ (by being female) Hopeful for results later today or tomorrow.

MRI on Friday night was interesting, as previously posted, it was a full head and spine but without contrast. The team there were lovely with my minor ‘melt down’ when I said it as probably a huge waste of everyone’s time, and that it had all been waiting for so long I’m now formally registered disabled which I wasn’t close to being back in June when I asked for the MRI and Neuro appointment to be arranged.

If I’m brutally honest I had a proper spleen venting about the lack of Neuro appointments in Basingstoke now, that the MRI machines there are no longer available for appointments in the area. Well it all sort of tumbled out along with a lot of tears and bless them they were lovely despite me being a blathering mess.

Now I guess I’m waiting for the appointment on the 27th with the new Neuro who hopefully can give some answers to the changes in the last 6 months and where we go from here. I’ve shared the questions I have already, so I will absolutely be expecting some answers. (yes I’m an insane control freak)

I finally made it back  from Southampton at 22:40pm ….. not my dream way of spending a Friday night, completed by a phone call from Gareth (who was at his works ‘doooo’ in London) to tell me that the signals were broken on the rail line from Paddington to Reading and all the trains were stopped. In a feat of magnificent ‘Britishness’ he and 3 random strangers also stuck in London clubbed together and got an Uber to drive them all home, dropping in Maidenhead, J11 of the M4, Reading Town Centre and Caversham each passing ¼ of the quoted cost to the last one out exchanging business cards so that if the cost was higher than projected they could pay the last chap back the extra.

On a bright note once hell Friday was done the weekend was really productive.

I got myself gassed at the Reading MS Therapy Centre, I also saw the Acupuncture Physio about my left leg – now here comes the REALLY good news, he poked at me for a few minutes and has said that my psoas muscle is in spasm. Apparently, this can be fixed very easily – about an hour possibly – the hour is booked for 13:00 on Wednesday – I’m very much hoping he can fix me and that by Wednesday afternoon I’m bouncing around like a spring lamb again.

We also chased the custom carvings that we had ordered as our Christmas presents to ourselves and the company who were doing them has gone bust – this they are only just admitting to 3 months on…. We now need to work out how to manage this situation through the police or the court to try to get our £1,200 back – or if you know someone big and scary send them my way please. Absolutely gutted because the custom dogs were something we really had our hearts set on especially with Amber turning 13 tomorrow.

So anyway it’s taken me 2 days to completed this post because of work and training and life, my blood results came back to here we go might as well do it all in one go …. Hey if I forget to hit the publish button you might even get post physio on this one too.

The Doctors want to talk to me about the Monocytes that are slowly rising.


I’ve said before Dr Google is a complete and utter ass-hole …. He’s a very shit doctor and I KNOW BETTER than to google things like this

Still …. Fuck ….. that’s not going to play on my mind ‘much’ at all is it

Thursday 14 December 2017

19 months post R2 - MRI and bloods week

First of all my apologies for the lack of a post last week, and it being so late this week.

I was away with work for a few days last week in a hotel and customer meetings and when things got back to normal I had 3 days of 'normal' to make up from being away - it's taken me a while. This weeks excuse is that the first 3 days were days of training (see last weeks excuse - although I did get to sleep in my own bed)

Tomorrow morning I have my month 20 post round 2 blood tests (and yay I can do my pee test this month) I'm not expecting anything strange to come up on this months results but hey it's the season of gift giving so you never know) At 19:30 tomorrow evening I have my MRI down in Southampton (because apparently now my Neuro is on long term sickness leave, in a feat of magnificently negligent incompetence the machines up in Basingstoke can't be used any more and we all have to do a round trip of 90 miles to get an MRI done or even see one of our newly assigned Neurologists - way to go for helping people with mobility problems you monumental ass-hats :-( .........)

I'm now the reluctant holder of a shiny blue badge which I refuse to use unless I have no choice. It lives in my handbag and I'm very much looking forward to the next time I see someone park in one and fail to display a badge and I can wave it at them and make the point I'm entitled to use one but don't unless I need to because there's always someone who needs it more and ask what their excuse is (kinda hoping I don't get punched in the face on these occasions)

In reality over the last 2 weeks we've got very little done on the 'life front' apart from finally finishing the gloss painting in the new room that's replaced the conservatory. We also decorated the Christmas tree so we have a little festive spirit going on. We've not bought a single Christmas present for anyone yet and time is certainly running out fast.

On a bright note the lovely Nino who did our garden fencing also does garden services (phew thank goodness I typed this - it reminded me to pay him) and he's done the winter tidy of our garden, ruthlessly lopped the hedges and best of all taken all the cuttings away. If you're in the Reading / Berkshire area, I HIGHLY recommend Woodley Fencing and Gardening Services for their service and professionalism.

Tonight is the work Christmas Doooooo. Now those of you who've been following this for the last couple of years will know I don't 'Do' work 'Dooooo's' - I just decline. But being in a new job in a smaller organisation it seemed like I should accept. I will of course be driving so I will be on my best behaviour and in reality will probably be making my exit long before it all gets 'interesting'.

So this weekends plan:

  • Christmas shopping - I'd like to get it all done in one day *aspirational*
  • Go and book and pay for the Christmas Ham so we can pick it up just before we head to Wales for Christmas
  • Get the Christmas Drink stuff ordered - OHHHH I can Amazon Prime that shizzle ......
  • Put feet up
  • As the Shepherd said to his sheep - I will then do Flock All

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

Tuesday 31 October 2017

1y 22ws post R2 – Flu sucks arse

Big Whinge Alert

I’ve now had a whole week of living with the revolting plague that Gareth kindly donated to me. I’m thoroughly fed up of coughing, sneezing and yacking up most of my meals. I’ve done everything right, paracetamol to bring down my temperature, I’ve squeezed a bazillion oranges for juice. I’ve slept more hours than a narcoleptic on a sleep binge and I’m bored of it all and just wish it would bugger off.

So now I’ve got that out of my system, actually today I’ve kept my food down YAY 😊 the coughing isn’t as bad as it was yesterday. I feel quite weak and wobbly (think Bambi on ice in roller-skates after a few glasses of wine) but all in all I can see the end of it now.

We spent time yesterday at the allotment planting out the Onions and Garlic that will keep us supplied next year. We did some major weeding as well although despite the progress it still feels like it might take all year just to do the first pass.

The conservatory / sun room is finally finished from a building point of view, we just need the plaster to dry fully before we can apply the wash coat (2/3rd paint 1/3rd water) to seal the plaster, then paint the ceiling and walls, paint the skirting boards and new window sills, put the furniture back – I can’t wait until it’s done but it still feels like a huge amount of work to cram into a weekend and go and get more weeding done at the allotment.

I have a day with ‘Boy’ this weekend too, I’m thinking bowling this week rather than something more strenuous – although I did suggest a dog walk so he could spend time with Winston and Amber. I’ll sort that on text between now and the end of the week.

The dogs had their first walk in ages last night with their friends Kirsty (human) and Jake (Springer Spaniel-Border Collie cross) there was much excitement and running round in the dark with light up collars, glowing balls and head torches that make us all look like new age Darleks.

I forgot to mention, I ‘SHOULD’ have hand a Neurologist appointment yesterday, a few weeks ago I go a letter through saying ‘Sorry we’ve had to rearrange your appointment we will see you February 22nd’ … my response was ‘Like Hell am I waiting that long'. I phoned up and had a big whinge, I’d been waiting 3 months for the November appointment I was damned if that was extending out to 6 months wait for an appointment. Quite tearfully I insisted there must be something sooner.

Be careful what you wish for – they did have something sooner, it’s at 10:30am on December 27th in Southampton.

Boom goes all the Christmas plans

Now Gareth and I will be taking 2 cars to Wales to spend Christmas with Aunty Kathy, on Boxing Day afternoon I will be leaving to drive home to Berkshire with the dogs, Gareth will be leaving to drive to North Yorkshire to see his family alone and then back together around new years.

It’s going to be a strange one being home in Berkshire on my own with the dogs. Everyone else will be away, or at home with their families, their plans are already made, and now in order to get to this appointment - I’m literally going to be alone.

I’m not entirely sure how I feel about that to be honest. Whilst I’m not uncomfortable with my own company, it bloody hurts to know that my family are gone and now I can’t even enjoy the time of year with Gareth’s’ family either because of the damned appointment.

Actually …..

I do know how I feel about it – I feel angry and bitter and cheated. I want to shout and yell at people, somebody, anybody, about the unfairness of it all. I don’t have my direct family left to spend Christmas with or even pick up the phone and talk to - and now they’ve gone and bloody stolen my time with my extended family and forced me to spend the time between boxing day and new year alone to accommodate their scheduling cock up or I can rack up 1000 miles to spend a few hours and sleep.

I’ll probably get more angry about this before I calm down or just get morose and weepy.

Whichever way I go it’s going to be a very different and not entirely in a good way I suspect.

Enough of this brooding nonsense. I have a new job that I love, a sun room where the conservatory used to be, the prospect of lovely fresh vegetables and fruit next year. I have my lovely husband, our  dogs and cats a home we love and my MS is sitting in the corner and not banjaxing my life. So Christmas this year is going to be weird – the rest of it will be fine and lovely it’s just a few days and it’s not like when his nibs was in the army and 6 month absences happened.

Time to man up cup-cake 😊

Monday 23 October 2017

1y 21wks post Round 2 - I AM THE PLAGUE QUEEN - Month 29 blood results

It's true - I am a revolting germy plague monster. It's all Gareth's fault, he has been self moderating by sleeping in the spare room since last Wednesday and full of cold but despite all precautions has managed to give me his plague.
I woke up on Saturday morning and my first thought was 'bugger' - Nice Michelin Starred Dinner planned for L'Ortolan and my taste buds are offline - well that's just not nice.
Oxygen was not going to happen, it's in my head, my sinus's, my ears, putting all that pressure 'under pressure' would have been rather say the least (if you think your ears can get sore on take-off and landing on a plane, it has nothing to how much it can hurt at 33ft pressure in a hypobaric chamber) plus there was the whole feeling like death warmed over to contend with. So I sat on the sofa in my dressing gown wrapped up in a fluffy blankie and felt suitable sorry for myself.
Dinner at L'Ortolan wit our friends was lovely as a party of 12 they had put us in a private room (presumably to protect the rest of their diners from a large party of people all wearing black tie) Unfortunately my taste buds were offline mostly so very little of the beautiful flavour got through properly apart from the Wasabi on the mackerel course,
Our allotment now has a nice big compost pallet arrangement to dispose of weeds (and there are a lot to deal with) but quite honestly I really couldn't be bothered to be doing with that level of effort when I felt  crappy despite feeling better being out in the fresh air.
I had my monthly bloods last Friday with the lovely one stab wonder nurse at my doctors surgery. Actually that reminds me - my bladder went on strike and I failed to provide a pee sample on Friday and I still have not dropped the bottle back to them to send off to the lab - must do that later today. Obviously my bloods are going to be all over the place this month with fighting infection so I'm not going to get all bent out of shape about it.
This month is my 29th set of bloods .... EEEK .... next month will officially be the half way point in my 5 years of blood tests. There is a strange feeling of achievement that comes with that realisation - I'm halfway home. It's been 2 1/2 years since I started this journey - how did that happen - I've made it up the mountain and now just need to get back down the other side - note to self do no refer to this as 'it's all downhill from here' LOL.
I feel like I should arrange a half way there event for next month in honour of this - I've never done a video or 'VLOG' as the cool kids refer to it - perhaps I can get over my camera shyness and do one for next month - perhaps enlist Gareth's help in making one of those happen - I'm sure he can work the YouTube thing. I guess then you'll all get to see my lovely new dark auburn winter hair and discover that I am a real live person and that yes I'm just this weird and 'yappy' in real life too.

Anyway after popping back and forth it was finally 13:00 and I could get my blood results so here we go for month 29

Wednesday 18 October 2017

1y 20wks Post R2 - Managing stress and the Allotment Queen

Over the last few months in our hours there has been a lot of upheaval. 

What with ‘Stair-Gate’ (not the one that stops Amber-Dog attacking the dustbin in the utility room)  the getting our stairs in our house made safe fiasco. Then the Conservatory roof turning into a sieve and the indoor water feature, changing jobs and life in general it has been a little stressful – and that’s just me. Poor Gareth has had to put up with me and manage his own challenges too.

As much as it pains me, to admit it - YES damn myself I’m mentally preparing for Christmas already. It’s not even been Halloween or Bonfire night and I’m mentally planning blasted Christmas for crying out loud. I blame the retail industry for the following reasons:

·         Our garden centres have their Christmas trees up and carols playing (how anyone who works there isn’t a homicidal maniac long before the big day quite honestly staggers me)

·         Farm shops are taking Christmas meat orders

·         Costco is selling Tower Of Treats and 7ft tall ‘Festive Drummers’ WTAF is a festive drummer? – But on a bright note they have the seasonal stock of different sized aluminium trays in so I can stock up and maintain my 10 year record of NEVER having to soak and scrub an oven tray because life is just too damn short.
I’m not a ‘BAH-HUMBUG’ type honestly, but can’t we get the other 2 events out of the way first? It feels like we have to ‘out-perform’ last year and have everything one and planned even earlier than we did last year or we are failures. At this rate by 2020 I’ll be ready for Christmas in July 😊
We took possession of the allotment on Sunday morning, I even ended up with a few fresh beetroots to take home courtesy of the previous tenants. It needs some serious weeding to clear up the strawberry, rhubarb and raspberry beds. Some soil preparation for the asparagus, onions, shallots, garlic and winter salad needs to be done by the end of this month so that the yumminess will start appearing in spring.
We need to take a look at the other beds and configuration to work out where spring and summer planting will happen and what is going in. The thought of being able to just stop on the way home and pick the ingredients for dinner, bring them home and have them on the place within 30 minutes makes me very very happy 😊
We are looking forward to the weekend and the first meeting of the ‘Lux Dining Club’ at L’Ortolan for yummy Michelin Star French food and wine pairings.
The Sun Room as the conservatory will now be known is so much warmer than the building it replaced and once decorated will be stunning.

Life as always is frantic, always enjoyable, thoroughly loving every minute of it.
Much love

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 ….


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

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