The world turns and everything stays the same

 I'm still loving the new job, I can add Czech Republic to the list of places I've flown,

I can add one rather 'elegant' fall in the kitchen to my oopsie count but I did manage to pull myself in front of the stairs and use them to get myself back up without help and sustained no injuries so thats a good thing.

It's been super hot here in the UK - consistantly in the 30's - so abnormally hot and because it's so abnormal of course aircon is just not a standard thing over here. Oh boy do I struggle with that - MS things see amplified and my feet and ankles swell up like balloons. On a bright note thats a great reason to enjoy ice creams and delicious salads - tonight is going to be a pear and stilton one with smashed roast potato salad and maybe a steak or some marinaded chicken to go with it.

Pain update - now this is the big one.

After several weeks of doctor reviews they put me on Oxycodone (yes thats right the scary shit stuff you see people addicted to in Line of Duty and Trigger Point) the lowest dose there is and I can honestly say perhaps its the dose, or maybe because I've lived with it for so many years my brain simply doesn't register pain in the usual way any more - but it's crap - no use to me at all. After a week on it I went back to co-codamol and bizarrely celebrated it only hurting to the usual dulled levels.

Anyway - last weekend doom scrolling videos I came across the usual video of woman on all fours twisting herself like a pretzel into 'the best back stretch to relieve back pain' thinking 'if only I could' and then the video changed to a man saying 'if you have mobility challenges you can do this instead' ....... well hello sir you have my attention now ....

Stand a little back from a door frame

Hold the frame and sit back into a squat - as deep as you are comfortable with but hold your weight through your arms

Hold for 10 seconds and then stand up again  

 

How bad could it be - if I let go and fall at least I was closer to the floor when it all went wrong

It didn't go wrong - when I stood my back hurt less than before I did it 😮

I did it again later and my back hurt a little less again

5 days on and in total I've taken the following 

• Monday 2 co-codamol in the morning
• Tuesday 2 paracetamol mid afternoon
• Wednesday ^
• Thursday ^

A little life changing - thank you random video man 

New job, life goes on

 It's been really good to get back to working again.

I'm loving what I'm doing, it's both interesting and challenging and I've had an opportunity to experience travelling by air a couple of times going to Spain on my own with my wheelchair.

Heathrow T5 is a dream accessibility wise, it works like a Swiss clock and it's a pleasure to deal with. The Spanish airport is less so ...... things to note, you spend a lot of time being 'transferred' from one bit of the basement area to another while they move you to the correct terminal and take my boarding pass away from me during this process which is 'unnerving'. There's nowhere down there to get water or food and bathrooms are not easy to get to.

In terms of 'life the world and everything' ..... well apart from work and life stuff I'm pretty much the same dull person that I always have been.

I start the injectable version of my Crohn's treatment on Wednesday, the 3 infusion that I've had have been life changing in terms of how Crohns affects my body it's like turning the physical clock back about a decade. In terms of how my head is with this - well that's improving but still a bit hit and miss - you can't undo a decade of anxiety and fear about your own body failing you in a few short months but it is getting better each day.

It's coming up to 'that' time of year again when all the anniversaries of loss collide at the same time. I'm hoping this year with work and travel that it's going to be less 'heavy' on me.

We haven't planned any holiday time yet this year to take the doggo's on holiday - must get on with that.

MS Wise - nothing has changed, I'm still working on balance and walking - it's a work in progress with no further worsening of problems. I've even been up making meals again on occasion. No falls since my last update - not elegant but also not on the floor on my arse so that's all good. Getting thrown from my wheelchair in Spain after a dropped kerb with dirty great hole in front of it isn't something that I would include in that scenario and the 6 lovely people who rushed over to help and the 'Spang-lish' conversation and thank yous were lovely even if the bruises were not.

Oh and last but not least our garden furniture has had a bit of an 'upgrade / pimping' ..... 2 years out in the elements had made them look grey and old so they're now colourful and pretty. 

To infinity and beyond ladies and gents 😎

Seeing improvements every day

I'm going to skip the usual apologies for being rubbish at providing regular updates and I'll try harder waffle, I'm sure you don't believe that any more after all this time so I'll go straight to the what's changed part.

I came across a post in one of the MS Facebook groups I follow of an American lady - Dr. Gretchen Hawley PT, DPT, MSCS who has a YouTube channel about how to improve your walking when you have MS. 

I've tried multiple Neuro Physio's in the past who have given me what can only be described as 'punishing' training plans to help with waking, balance and foot drop and the exhaustion of these routines has always been detrimental in that the exhaustion they cause has broken me for days.

What she does is different - it's gentle and simple and helps you make 'micro changes' focusing on small parts of the overall problem at one time. More importantly because it's little adjustments it's achievable.

I won't lie the mental effort of being aware of every step you take and making that 'micro adjustment' with each step is huge initially but it's mentally tiring not the bone deep physical exhaustion of feeling like you're wading through tar.

I started doing these small changes last Tuesday so today is day 10 (probably the longest period of being able to continuously manage doing exercises that I've managed in 7 years) and I'm seeing improvements in the following areas

• I can now walk up stairs rather than dragging myself up 2 handed on the handrail - I have one hand on the rail, I'm stood up straight and I'm lifting my legs step to step without crashing my feet into the next step or having to help myself by lifting the leg with a hand because it won't go high enough
• I'm standing up straight (most of the time) rather than hunched over like a crone
• My foot drop is reduced - I'm keeping my feet square as I walk (mostly) 
• I've walked directly across our kitchen several times now without holding on to counter tops, chairs or doors and last night I did the same across our lounge without the help of my walking frame - this is HUGE because that's the area I have had the most falls in and quite honestly it was absolutely terrifying to even try this.
• My balance is improving, don't get me wrong I still look like I've been on the gin but it's better than it was.

This is the video that made me stop and think 'well I can do that' How to improve walking

I'm also doing this exercise to help strengthen my legs so that next time I fall (because I will) I will have more strength and confidence to get myself up off the floor Lunges

I'm doing these things when I'm sitting at my desk or standing waiting for the coffee machine in my kitchen to finish pumping out the wakey wakey juice Leg lifts and foot lifts

Just small changes, no pushing myself for X number of repetitions, or X amount of time continuously, just what I can every time which is a little more than I was doing before.

Walking has become more 'natural' so me if that makes sense? After 10 days what took 90% of my brain to control on day 1 is simply natural to me now to do with each step so now I'm putting that extra brain space into consciously making those movements bigger / longer / stronger or deeper. I've even noticed I'm not holding my head 'back' as much walking - my chin is now down in a much more natural position (which of course is certainly helping with the balance thing).

In other news I've also lost over 2 stones in weight (32lb's in old money and 14.5kg in new) and have the start of a waist again and collar bones which is also rather cool.

My new mobility car is due some time in the next month and I will be starting a new job which I'm most excited about.

2026 is shaping up to be a great year.

Much love and positivity to you if you're reading this. I hope 2026 is great for you

Tracy

xx

Still here just really rubbish at updates

 I'd apologise and make promises but let's face it you're sick of that by now and know it's all hot air - I am sorry and I am going to try harder to keep this updated.

So where did that last 6 months go?

Well Christmas was lovely - we did it 'home alone' style for only the 2nd time in 16 years and oh boy was it a relief not to have to do all the driving, sleeping in different beds and trying to keep the dogs happy when they don't have secure access to a garden with grass for the necessary 'emptying' 

The Crohns thing is being 'managed' mostly with the use of co-codamol which I need anyway for pain management but has the handy side effect of blocking you up but with Crohns it just keeps things normal.

I had a 'funny turn' in the heat during the summer - overheated and blacked out here at home so I had some heart monitoring done. Apparently I have an 'ectopic heartbeat' I've probably always had it and its never been noticed but fortunately the propranolol I take for anxiety works for that too so no extra drugs YAY 

MS wise - well everything is bobbing along, I have my mobility challenges, sensory ones (that numb left hand still drives me nuts) I'm trying to do more exercise to build up my overall strength and fitness with varying degrees of success but I keep trying.

I'm due another dose of Ocrevus next month (the timing has changed as they delayed the one in May last year by 3 months when Crohns was diagnosed because I was on a 3 month steroid program and they didn't want me turning into the Hulk with added IV sudomedrol) As usual I'm quite looking forward to it all because it's really no bother at all apart from the super early drive into central London.

Winston had a horrible accident on New Years Eve - the dogs went racing into the garden at top speed and bumped into each other - he used his face as a brake by smashing into one of the railway sleeper planters we have. Blood everywhere we were terrified he'd broken bones in his little face and might lose his left eye but fortunately after racing to the emergency out of hours vets and a 'wallet-ectomy' (£380 just to walk in the door - thank goodness for insurance) we were told it was all superficial and apart from some interesting scars and a thumping headache he'd be fine.

Life just goes on and we do our best don't we,

Anyway I'll stop wittering now and try harder going forwards

Much love from me 

So MS is the thing I'm least concerned about now

Not something I thought I would be saying and also if I['m going to be brutally honest with myself it's probably at least half of the problem.  but OMFG - Crohn's is awful.

There was a certain level of relief to know the toilet urgency was Crohn's not MS, I know why it's happening - that fact I can't just run to the bathroom or even move quickly is probably 50/50 on the MS and the Crohn's - or 95/05 on the MS depending on how you view the leg weakness, wobblies and balance - I can't run even on a good day but on a bad Crohn's day that little balance and coordination is shot to shit and I can barely even move my feet in a sitting position let alone standing up and trying to cross multiple rooms.

The 24*7 pain which can only be described as feeling like the Alien is trying to claw his way out of my abdomen is horrific and barely managed with a cocktail of Oral Morphine, Paracetamol and NuLeaf CBD oil but when the spasms start it doesn't matter what pain relief is being used it literally sends me to my knees

I'm now pretty much terrified of all food and drink with the exception of crisps and chocolate bars. When things don't follow the usual Crohn's 'Gone in 20 minutes protocol' - where in my world did I ever start thinking of the 'I'm going to need to plan for bathroom use 20 minutes after food' situation as not only stressful, traumatic sometimes and really bloody inconvenient - but it's also bloody fabulous because I'm not backed up inside everything is moving and it's a pain free day.

After a couple of weeks of what can only be described as a nightmare involving me blacking out from heatstroke and throwing up all over myself, needing wheelchair transfer just to get into the MS therapy centre to get Oxygen treatment, nearly missing bloods in London because I had to go back home the first 2 times I tried to leave at 6am. Don't take Co-Codamol ever again for pain management Tracy -the price is too high 😔

I'm picking up my sword - time to address the problems I can directly influence - what's inside me ......

Lighter life shakes for meals

Nothing solid consumed to enable insides to clean themselves out

Hopefully Ketosis which should help with energy levels

Bonus - should shift some Chubb 

I need something to work here because it's not just physical health this is getting to my mental health, turning me into a hermit (well more of a hermit) destroying my confidence and making me feel like I no longer have any value so fight the enemy you can see Tracy - the mirror tells me the biggest enemy I need to deal with is the shape I'm in - inside and out

watch this space

Yikes 2 posts in a month

 Who is this person who's actually updating Tracy's blog I hear you wondering ....

2 posts less than 3 months apart - surely I've been replicated by a machine - one that remembers to do stuff .

'Tis me

Okay maybe it's because I need a bit of a whinge - not MS related, the blasted Crohn's has reared its ugly head again. A week into the exercise routines from the Neuro Physios and my insides went nuts like the Alien film where that chap is on the table in the canteen and the damn thing is chewing it's way from the inside out - Fun fact - the person who wrote that scene has Crohn's ..........

So I was making decent progress, the walking was improving I had a spreadsheet for all the exercises and doing them diligently but this has put a spanner in the works to say the least. 3 months of mega steroid doses again, my ankles are the size of my knees and the only shoes that fit on my feet are ugly old people shoes.

I guess the take away from this is that improvement is certainly possible and achievable - once the Crohn's pain takes a long hike off a short cliff.

Anyway not much else to add except summer has come to Berkshire, it's glorious, blue skies and sunshine and the strawberries are making an appearance in the garden. 

Life is good (if a bit ouchie right now)

love from me x

Life MS and other things.

 I have no excuse thats worth trying, I'm not going to make any promises that are likely to come to nothing - I've just gotten really crap at this these days - I am so sorry 😕

The new job isn't a new job any more, I've been here for nearly 6 months now and I'm still loving it.

I've had another birthday - I'm 52 now 😱 - this doesn't seem possible how on earth can I be that old.

I'm due my next dose of Ocrevus a month today and I'm hoping it will be the usual non event.

What has changed ??

I've talked previously about PIRA (Progression Independent of Relapse Activity) and that it is something that I've been experiencing for a long time - it's the reason I went on Ocrevus in the first place and having O doesn't seem to have made that much difference.

What has changed of late is what having a migraine does to me. My predictable 2/3 focal migraines a year have increased and they're now having an effect on my whole body - really everything - to the point that I'm barely able to move my arms and legs at all for about 12 hours after one.

They're also happening every couple of weeks now .......

This has been incredibly frightening - because for the short time it happens it's like the worst, most terrifying feeling I've ever experienced physically and the effect it's had on my mental health has been equally debilitating. It's completely rocked my confidence, there have been tears, recriminations and raised voices and that's just for starters, the hopelessness and helplessness really took a big bite out of me.

It was Gareth who suggested a neuro physio appointment 

It's not going to help with the migraine, but it I can get back some of what I've lost in terms of mobility, walking and strength then hopefully the migraines won't be such a debilitating physical hit and as a bonus I'll function better for the rest of the time too.

Now I'm a program manager - I risk assess everything and 'just seeing one' particularly privately seems like a bit of a risk so of course I tried to book 3 assessments - 2 private practice and 1 with Berkshire MS Therapy Centre.

I've had 2 assessments (the 3rd couldn't schedule me in) but the 2 assessments by different facilities match in findings and exercises required to help improve things. and it's now a week on from the first one.

I'm doing all the exercises as I should at the frequency they recommended and I'm seeing improvements already.

I'm never going to run a marathon and would never want to BUT I would like to be able to walk around my local shop with a little decorum and not hanging on the shelves looking like I've been on the gin.

I walked around B&Q yesterday using a trolly as a walking aid but I left the wheelchair in the car. It was slow - inelegant in places and damn but the amount of brain power it takes to not tip my head back, keep my shoulders down and relaxed, my arse tucked in and lifting my knees whilst remembering to breathe and try to carry on a conversation is absolutely exhausting - but I did it.

Small victories 👍

I'm going into the office tomorrow for a day with our team and I'm planning on leaving Bob in the car. He's there IF I need him, not FOR the day because I will need him. 

It's taken years to happen, but over the years I've literally retrained my body to not walk properly and to do it in a way that not only causes me massive back problems, but damages my balance, my strength and my confidence.

Its going to take a lot of time and effort to retrain myself out of those bad habits relearn how to walk properly again but over the last week I've proven that I can do it - I just have to work super hard 'to' do it.

Of course improving my overall strength is a key part of this and I'm trying to do that at the same time because it's the repeated 'doing' and teaching the muscle memory the 'how' is only possible if I'm not asleep or slumped in a heap trying to work out if I have the energy to manage the 'can' of it all. 

To that end my recumbent bike is now being called back into service as is the sit up bench and some bimbling up and down the garden a few times a day is also being done. Small squats and leg lifts whilst I'm waiting for the kettle to boil, hip curls / back rolls whilst seated at my desk and some arm waving around to name but a few.

Yeah I'm sleeping well these days 😂😂

We've booked a week in Norfolk for June and I'd really like to be able to walk around the garden with the dogs so thats my 'mini target' for now.

I'd highly recommend getting an assessment done if you're struggling - the worst that could happen is they can't help make things a little better but you don't know if you don't give it a try.

So there we go - 4 months in a single bitesized update.

I hope you're well and looking after yourself

much love from me 

x

Far too long between updates (again)

 So what have I been up to in my long absence and how have I been ?

Well the Crohn's is under control and back to how it's always been a quiet rumble in the background and the usual complete lack of trust in the behaviour of my guts and arse - at least I'm not blaming it on the MS any more 😂. The steroids did the trick and apart from some low grade dietary changes life remains the same.

I've also got a new job working for a broadband provider and I'm absolutely loving it. I work with some awesome people in an environment that is productive and just  great vibe - it's been a long time since I enjoyed getting up for work and I'm loving it.

The driftwood stick Christmas tree is up and decorated and today I'm going to do a 'rationalisation' of the gift list for the family but I think I'm only 2 gifts away from having everything covered already - yup weird for me to be so very rational and organised but I guess a lot of that is because I'm so much more relaxed in the new role and with the stomach problems under control.

The dogs are curled up in their crate having a snooze surrounded by pretty much every toy they possess and Murphy-Cat is finally using the Cat Palace I bought him from Christmas last year as a safe and warm place - just in time for the weather getting colder too so I'll be far less worried about his refusal to come into the house unless we're all shut in the bedroom at night.

I had round 7 of Ocrevus last month - the usual complete non event of turn up get infused go home and carry on as normal until the next round in May '24 - I had my pre treatment MRI as well and still waiting on the results of it but I'm not expecting anything other than the usual nothing is happening in your head response 😂😂

Honestly there's not much going on MS wise so nothing exciting to report - I get up I do my 'thang' and life goes on which I guess in terms of dealing with the MonSter is absolutely the best result I could hope for from the treatment.

I hope that everything is good in your world and life is treating you well. I'm always here, if you need to talk drop me a line.

Take care, have a great Christmas or whichever holiday you're celebrating.

Much love

T

Explain yourself Tracy - where have you been

 The answer to where have you been is in hospital for a while and having lots of scans and tests and at home feeling more ill than I have ever felt in my life.

 Remember this time last year when I was having all those bowel problems and ended up being checked for all sorts - well it came back but far worse, not just the bowel problems, crippling pain in my abdomen with spasms and I couldn't eat food because that just made everything a hundred times worse.

 I'm out the other side now, eating again, today is my first day pain free in months and feeling human again - which is just as well as today is our 12th wedding anniversary and yep you guessed it we are off out for  a Michelin starred meal later.

 So what was it you ask ...... I have Crohn's disease - yep MS, dodgy thyroid and now Crohn's as well - my immune system really does hate me and it is absolutely out to get me.

 I've known I had IBS for at least the last 30 years but it now looks like it's probably been Crohn's all along and this has simply been a massive flare up of epic proportions.

 Today is my 2nd day on a course of steroids to bring down the inflammation in my intestines - there's about a foot of them inside which were so inflamed that solid food couldn't get past (yeah I've been living on yoghurt and soup and even that hurt) 

 So what does this mean - well in terms of the MS it could mean big changes. The steroids are a decreasing course for 3 months and if the first 24 hours are anything to go by then they're working and it's all going to be good. If they don't work then Crohn's is treated with an infusion of a medication.

 The treatment is called Infliximab - the brand name for natalizumab - 'why does that sound familiar' that little voice in your head says - well that's because natalizumab is also the medical name for Tysabri 

........ well isn't that convenient 

  ......... Kind of I guess 

 Long term if I need to have this treatment for the Crohns then I will need to stop the Ocrevus and move to one of the Natalizumab based treatments but thats going to be at least 3 months down the line and well between my Neurologist and my Gastroenterologist I guess they'll work it out.

So my humble apologies for just up and disappearing for so long - my MS really hasn't been something I've thought about in all this it just wasn't a priority at all and I've been signed off work completely since the start of July and that runs until the middle of August but I'm planning on starting back working tomorrow.

Hopefully I'll be updating more frequently again now I'm human again.

Hope you're taking care of yourself and living your best life xx

Where did all that time go?

 Good grief I turn round and it's been 5 months since I put an update on here. I'm sorry about that

I guess first things first - that problem with my stomach and the 'c' word being bandied around really scared me knocked for 6 - it's all okay nothing horrible to report but still it was a shock to they system and a 'reset' in many ways of life.

Stress and anxiety were ultimately the main cause of the problems and a bit of a reshuffle of life has happened as a result. Some things which were not positive have been stopped and I'm concentrating on things that are good for me instead. 

So what happened in that time - I'll list out some highlights 

• Christmas - another one in the bag, Wales then Halifax this year most enjoyable and lovely to catch up with the family
• My Motability car finally turned up - yup the unicorn is real and I absolutely love it
• We had an awful health crisis with Winston where we thought we might lose him which was terrifying but thankfully all resolved now.
• I reached level 51 in the game of life ........ gulp
• Gareths mum has had a fall and needed new bits for her hip installed so she's now part machine
• Kathy and Sue did a world tour of Europe by train which was made far more exciting by France being on strike meaning they went to a number of countries they hadn't planned on visiting before finally arriving in Rome in time to watch the Welsh Rugby team make up a little for their really poor performance in this years 6 Nations.

In terms of Gareth and my dedication to hunting down lovely food experiences we can highly recommend Aktar at Home if you're after a fabulous tasty sharing experience we got the 'mini' box for £45 4 curries, bread and rice - we've eaten it for 2 days now and barely made the half way point.

The sun is shining down here in Berkshire, it has that 'spring is here' vibe and it makes me feel very positive.

Next round of Ocrevus is due in May so I'll be doing the blood test round trips soon and phone consults with the team to get it all sorted.

Here's looking forward to what I really hope is a sunny relaxing '23 and possibly nice overseas holiday for Gareth and I

Time for an update another round of Ocrevus in the bank

 So it's been a long time (again) I'm going to stop making hollow promises and just say I'm going to keep updating and won't forget you.

So what's happening?

Well a week ago I had round 5 of Ocrevus - fast infusion and I had the steroids this time too thanks to the nice HRT patches I'm on no overheating this time too. I had the usual itchy throat for a few minutes when they pushed it up to 300 but apart from that all very uneventful. New round is booked in for May '23 so here we go again.

The 5am start to get to Charing Cross by 7am so I can park worked like a dream especially since we're now back in 'normal' times so rush hour is a 'thing' again - randomly there was less traffic in rush hour than there was in covid times for the last 3 rounds - go figure ??!!??

I had my 2nd MRI of the year last month and the report came back as stable again - that means I've now hit 7 1/2 years without new lesions or active ones - YAY go me 😎

I've managed to purchase 1 Christmas present so far which is very rubbish but we will get there. The major stuff like orders for meat / awesome Italian meal for when we arrive in Wales the day before Christmas Eve and of course the Christmas from Majestic Wines are all sorted.

The stomach problems (not an MS thing) are slowly getting better. Changing when I eat has contributed to this - I'm pretty ruthless now about not eating for at least 16 hours before I leave the house so physically it can't happen. Meal sizes are now child size portions to minimise the cramping and bloat that comes with every mouthful. 

The levels of stress and anxiety in my every day life have reduced enormously in the last few weeks. Feeling a little more in control of my innards and being able to trust that I've taken the precautions I need to leave the house without fear of my guts betraying me has been big part of that. I guess all those tests coming back clear helped enormously too.

Gareth, the dogs and Murphy-cat are all doing great and enjoying life. I think we're all looking forward to the long break over Christmas and new year when we can all just relax and breathe (after the great UK road trip) 

Hope life is treating you well much love from me xx

The last month - in short

 Seriously I've done sod all except work and live - it's been so beige and normal that I couldn't really think of anything to post - In all honesty there's still nothing exciting.

We had a night over at some good friends house having a lovely dinner and catching up, Gareth's parents have been for a visit for a weekend and life has been normal 

I guess I should say that the recent problems with my stomach continue - whats causing it remains unclear but thanks to the test results going back it's not celiac or colitis and thankfully bowel cancer - we're running through medications and food type for an allergic response that's just turning my insides liquid with every meal I eat - leaving the house has required military planning for the last 4 months - nothing to eat, no drinks but water for at least 16 hours before I plan to go out.

I can force my insides to comply (this was the doctors suggestion to try) I take co-codamol the night before and on the day despite not needing that level of pain relief but that doesn't just stop the squits - it backs me up too which results in pain ........

Eating anything more than the tiniest amount makes stomach swell like I swallowed a football - it's painful and uncomfortable and results in the same messy ending. Investigations continue - I'm sure I won't remain a medical mystery for ever.

I've been into work today for the first time in 4 months - it's almost like it's getting back to normal again. I saw a couple of colleagues in person for the first time in 2 and a half years - surprisingly emotional really since today is the last day for one of them so it's going to be the last time.

Apart from that life and MS has been uneventful - ohhh I had an MRI last weekend - should hear about that soon(ish) not expecting anything life changing - another nothing changes is absolutely the result I'm hoping for.

Next round of Ocrevus is next month on the 24th at Charring Cross - this will be my 5th round of it. I'm even thinking I won't forgo the steroid this time since the magic patches seem to have nailed the menopause problems 

Talk to you soon 

T

xx

8 years and a week ago today

 It was Friday night Gareth and I were walking round Tesco's in Chineham doing the weekly shop when all of a sudden the world started going dark, I almost knocked my teeth out on the handle of the shopping trolly as my legs gave way and the pain in my head that had been constant since Monday when the 'pop' happened became far far worse.

Of course the Doctors surgery was shut for the weekend by then so we had to call Hants Doc the out of hours service who insisted I got straight to Basingstoke Hospital (that's where Hants Doc were based) I wasn't there long when they put the wrist band on me and told me I wasn't leaving.

A bleed in my brain they suspected - off for a CT Scan straight away and a night in the Acute Care Ward.

When morning came they talked of 'shadows' in my head. They could be bleeds, strokes, possibly  tumours or MS

Did you ever wonder how you could ever hope with everything inside you that it was 'only' MS ??? 

That weekend with everything in me I hoped that it was 'only MS' because that was the one that wasn't potentially fatal.

The next day they talked of MRI's and lumbar punctures - the possibility of Lyme disease while I lay curled up in the hospital bed with all the curtains drawn around me wearing wrap around sun glasses and listening to 50 shades of absolute turd as an audio book

Sunday morning came, I'm still sitting like a mole but the banging in my head is a little less severe than it had been. The curtains around my bed are now pulled back so I can people watch (through those ever so attractive wrap around shades). 

Late morning the attempts to do a lumbar puncture start ......

    -  5 attempts where they missed completely and on one rather spectacular 'miss' they hit the nerve for my right leg and it shot up in the air in an attempt to 'Eric Cantona' the head off the doctor who'd arsed up the first couple of attempts.

Then they give up and decide to send me up to theatre later to get it done where people have more experience at these things 

It gets a bit fuzzy at this point by the time I'm taken to theatre it's probably 7-8pm my back feels like I've Gallen on one of those spiked balls on a chain you see in things like Game of Thrones and now I'm in theatre and I can't remember if they succeeded on attempt 3 or 4 I just remember sobbing and saying yes every time they asked was it 'okay if we try it again' 

I think it was 9pm when they got me back to the ward - they'd said I could go home if I was okay 2 hours after the Lumbar puncture and I was damned well going home. I could take my own pain meds, lie in my own bed with the curtains closed and feel sorry for myself in comfort but the hell was I spending another night in the hospital. Gareth came and brought me home at 11pm.

It feels surreal reliving this by writing it down again ... like it happened to someone else and I guess in a way it was someone else - the other me - the one 'before MS'

I have changed - a lot, there's no denying that. Mostly for the better rather than worse I hope.

Life goes on - so I'll pick up my sword and go to war once more xx

Wedding things - ours and other peoples

 Quick update on life, we had out wedding anniversary over the weekend - a very lovely meal was enjoyed at the Italian in Newbury that is now our favourite in the area (for Italian food) 

 We're off up to Scotland on Saturday for a wedding on Sunday - the beautiful Aeleana and her lovely husband to be Micheal. Allie is one of my 'acquired' sisters - well her whole family are acquired really, her brother Steph and mum complete the set. I have my outfit, Waze to guide us for the 440 mile drive and a play list with 32 hours of music on it.

 The dress I will be wearing is one I haven't been able to fit in for over 9 years and I've had it shortened to a cocktail (spelt wrong???) dress length - the 3 1/2 stone of weight loss is really noticeable now 😎

Just got to make it to the end of the week with my sanity intact I guess.

Hope you're well

I've done another video on the tube thingy which shows the changes with the weight loss and the exceedingly long hair - enjoy - laugh at me whatever you need

Take care 

Much love xx

Oh dear - where did that time / weight / pain go?

 Perhaps it's the heat wave, or possibly menopause brain - so sorry I've not posted for a month.

There has been some drama and a trip to Wales involving a very badly behaved and gangrenous Gall Bladder which had to be removed from the bagging area and then huge amounts of antibiotics to ensure there was no infection left. The 4 1/2 hour drive either way was brutal and it took a few days once home to simply catch up on the rest and let the sore shoulders loosen up again.

We've had Gareths parents here for the weekend for a lovely catch up and wonderful food.

I had my injection in my hip, it's been pretty well behaved since then but it wasn't a pleasant procedure and whilst the lovely doctor said I was very brave, sadly she didn't give me a lollipop or a sticker 😂😂

So here in the UK the temperatures are apparently hotter than Jamaica right now - there are 2 ways to tell if someone is British - do we like queueing (yes) and are we complaining about the weather (always) 😂😂 

I think I've previously mentioned in here that I think I was born in the wrong place because like a lizard or a snake I like to be warmed by the sun - I now formally withdraw that suggestion 😂😂😂 what was I thinking ? I'm ginger - I burn on a cloudy day, I'm middle aged, menopausal and have MS - I'm not built for this 😂😂😂😂

On the subject of 'project Tracy' - I've now surpassed 3 stone in weight loss - I'm actually only 3lb's away from 3 1/2 stone now (that's 20.9kg if that's how you recognise the numbers or 46lb if you can't do the stones thing) I'm into my first pair of 'aspirational' jeans easily and if it ever cools down enough for me to get the motivation up I might be into the middle pair too, but it's simply too warm to even try right now 😂😂😂 - It's still a work in progress, but I'm getting there and it's not horrible.

It's our 11th wedding anniversary on the 30th so we're back to the Hand and Flowers for a lovely meal, my new office desk is due next week so I'm having a clear out this weekend to get ready for it. We're up to Scotland on the 6th of August for the wedding of a beautiful lady who I'm proud to regard as a sister - I definitely need to invest in a new outfit and hat for the occasion - it's going to be so good to get together with the Scottish clan, it's been far too long and there are 2 little clan members that I've not even met in person yet.

It's Friday, the weekend is coming, the BBQ's and pizza oven are being put through their paces and life is good.

Hope life is treating you well and you stay happy

Much love from me

xx

Hip procedure booked, weight loss continues and by heck it's warm

 So first lets address the big hot, sweaty elephant in the room .... (not me) summer is here and the UK is hot hot hot. Now with the high number of latent Scottish ginger genes I possess this was never a great time for me in the past. To pinch the line from the film Terminator - 'anyone (who's ginger) not wearing factor 1,000,000 is going to have a really bad day' - it really does sum me up perfectly. I burn through Factor 50 in the UK when it's 15 degrees and sunny - yes that sun block you can use on a newborn - no use to this  ginger at all.

I saw the hip specialist last week and had an X-ray taken too. Turns out I have Osteoarthritis in my right hip - the first official arthritis diagnosis although it's been mentioned occasionally over the last few years. Not a surprise really since both my mum and grandmother had it. 

I'm booked for an ultrasound guided injection in my hip next week in Ascot (once the racing is over and done with) steroids and pain killers initially - apparently it should give a good idea where we need to go from depending upon the results.

I'm still losing weight, still working with the Physical Trainer 3 times a week and life remains terribly 'beige' if I'm going to be totally honest. There's not a lot to report on in my MS world, it is what it is and I'm working hard to make it better.

Hope you're taking care of yourself and those you love xx

Round 4 done, nearly 3 stone lost and hip update

 I had round 4 last Thursday and as previously mentioned - I had the fast infusion and I had it without steroids this time 😎

It was all really rather uneventful, if I'm honest - no faster than any other infusion because I got there for 8am, but it was 11:30 before they plumbed me in. I had a lovely anti histamine snooze and it was all done

Unknown to me the woman in the bed opposite had requested a heater be plugged in and then pointed it in my direction so when I was done and unplumbed I had the most horrendous menopause sweat and had to sit down for nearly an hour. Can't really complain as the HRT 'happy patch' on my arse cheek are doing a grand job - I've had 2 full on hot flushes in a week instead of the 10-15 a day I was having before the happy patches.

The drive home from the hospital was a windows open, coffee on tap and loud rock music affair, I got home we ordered takeout and by 7:30pm I was fast asleep. All things told the Flush really flattened me - I think I'd have been okay if that hadn't happened, but who knows.

The diet is still going well. I'm now coming up on the 3 stone loss mark. I've lost 2 dress sizes so far and over 30 inches cumulatively. I've still got a long way to go but it's going really well especially in conjunction with the Physical Training sessions - I have muscles - MUSCLES in places I've not had muscles for many many years 😎 we're not talking substantial body builder stuff here, just some visible proof that I'm trying bloody hard to get myself back

I had an MRI last week too on my 'gippy hip' and wouldn't you know it - it's definitely leaning towards the 'knackered' end of the spectrum. The Spine guy has referred me to The Hip Guy (yes I know there's a song about that) so more news on that front a week tomorrow.

I managed to do Costco last weekend with a trolly as a walking aid (Bob was flat so I had no choice) and I was still playing catch up after a day visiting Claire, taking the boys to the park, taking the Pizza oven to her so she could enjoy Gareth's home made stuff from the comfort of her bed.

Life is good, if we had more sunny days and less overcast, cloudy and rainy it would be better

stay safe, stay well, much love from me xx

MRI bloods and Round 4 preparations and HRT

 So my 4th round of ocrevus has moved forward to Thursday next week, all but 1 of the required bloods have been done (the Lymphocyte Subset levels can't be done locally but have been agreed to be done on the day by the charing cross MS Nurse team) It's also been agreed that this time I can have it without the steroid 'starter' ...... the steroids have always hit me hard, they mess with my bodies temperature control for weeks and on top of my Menopause hot flushes thats was going to be an absolute nightmare - so this time I'll be taking my shot of Ocrevus neat 😎

I've had an MRI this week on my hip thanks to the Spine guy and hope to have news on that soon. 

The next thing its HRT - OMFG - miraculous stuff - slap a magic Conti patch on my arse and suddenly I'm human again - I have energy I feel 'normal' 

I kid you not - I popped it on Saturday afternoon and bang - Sunday morning I woke up refreshed because I've not had hot flushes repeatedly through the night that kept me awake, I walked around Costco yesterday with only a bit at the end where I had to use the trolly as a walking aid - it wasn't pretty - I looked likeI'd been on the gin already with the wobbles and oh my was I slow 😆 but I did it. We popped to Waitrose after that and I did it again walked mostly a little trolly action at the end.

By dinner time everything ached - but then you'd expect that right it's been a good couple of years at least since I did that - and hey I earned those aches 😎

This morning I've had my physical trainer session and smashed it - especially the leg exercises which up to now I've needed up use both hands on a chair to maintain my balance - today I stood next to my office chair and rested one hand on it and did them all without a wobble.

I'm hoping that this is another step in the right direction for me, 

Roll on Thursday, lets get round 4 done and kick MS up the arse again 😎😎😎

Spine guy appointment done, diet update and 16 days to Ocrevus Round 4

 Time seems to whizz past so fast these days (I know thats a getting old thing)

This weekend the painter is coming back to do the final 2 rooms in the house that we didn't have done last time. Our new headboard which I swear we only ordered a couple of weeks ago (but I reality was just over 2 months ago) arrives on Friday.

I'm back in for Ocrevus round 4 on the 27th and as a pre-emptive strike my docs have prescribed some 'anti-UTI' meds so I don't fail the test again - I'm actually rather looking forward to it even though I know it's going to wipe out my Covid antibodies and T-Cell response again. Fortunately I don't seem to have the 'crap gap' that others report I just stay the same in the run up and afterwards (crosses fingers throws salt over shoulder and salutes the magpie in case I'm jinxing myself but saying that)

I had a 'day out' yesterday - well a couple of hours at the Royal Berkshire Hospital to see the spine guy. I'd mentioned that it might be related to the Facet Joint Degeneration on the right side of my spine but I'm having problems with my right hip - I demonstrated a couple of things that cause pain and weakness then he had me lay down on the exam table and asked me to lift my right leg ... damned if laid out flat the blasted thing wouldn't move. He lifted it up at aright angle then turned my lower leg inwards towards my left leg - all fine - then he rotated it outwards and bloody hell did I yelp .... loudly which was a double surprise for him - one that it went that way easily because I'm pretty flexible but the yelp hurt his ears.

He's asked for an MRI to be taken of it, he thinks the cartilage in my hip is damaged / deteriorating / knackered in addition to my back problem we know about. I can put that through BUPA at least as it's something new so back to the Rutherford Cancer Centre I go for the MRI and then probably a referral to a hip specialist.

He's really chuffed with the weight I've lost and said yes its definitely the right thing if there's a possibility I need that hip replacing and also just for life in general. 

It's over 2 years and 2 months now since home working became the norm, we get out and about again now but I think the paranoia of the last couple of years is going to take a long time to wear off, I still regard everyone walking around as plague monsters.

All in all, life is good some stuff is happening, some stuff is changing and some stuff (ms) stays the same

Stay safe and well much love from me 

xx

A VERY long weekend, Gareth's birthday and 'stuff'

We had 6 days off for the Easter weekend, this year Gareth's birthday fell on the Tuesday so we had an extra couple of days to enjoy ourselves.

I got Gareth a Pizza oven for his birthday, whilst I have to admit Gareth making loads of pizza's is not going to be helpful for my diet, it's made him super happy and he's produced some really lovely pizza's and garlic bread from it.

I've now had my 5th Covid vaccination - if there's microchips in them I think that I'm probably now able to communicate with the International Space Station simply by clicking my fingers, sadly I still can't just wave my hand over a chip and pin machine and say 'you have been paid' like a Jedi 😂😂

We've put telescopic draws into a couple of tall cupboards which allowed us to get rid of a load of stuff we didn't know we had and certainly didn't need and rationalise them into a 'dog & cat stuff' cupboard and a larder cupboard. We're so close to the end of the kitchen renovation now, some minor touch ups and one more kitchen counter to be refinished and we are done 

Before

After 

Larder

Dog & Cat Cupboard

In hindsight putting the dog toys on the bottom shelf was probably an error as Winston is straight in there helping himself to tennis balls every time the door is opened - little treasure 😂😂

I'm now doing 3 sessions a week with the Physical Trainer (not because I'm rich and can afford that) he's got a 6 week holiday scheduled for later this year and the 12 sessions I would have had in that time are being popped in now before then. It's helping even more for me to rebuild some strength in my arms and legs. I'm still working on my core with the sit up bench too. 

The one thing that I'm really struggling with right now though is anything that involves 'cardio' - and by cardio I actually mean anything involving e moving around - my heart rate goes crazy and my Fitbit thinks I'm doing cardio when all I'm actually doing is shuffling to the fridge to refill a glass of water. I had another fall on Good Friday and around mid day on the Saturday my heart rate was at 148 beats per minute - the Fitbit recorded a whopping 3 hours of 'in cardio exercise zone' time with me shaking like a leaf - really quite frightening while it was happening which I'm sure didn't help the heart rate one bit.

I've asked Gareth the help me get the recumbent bike set back up properly in the upstairs room so I can use that to see if I can get something like stamina going - one problem I don't know where he put the power supply for it when it was moved up there - hopefully we will locate that this evening.

In the interim I ordered myself some of the 16mg CBD capsules from CBD Brothers as an experiment to see if they will help with both my anxiety over the heart rate thing but also to help me get a better quality of sleep which I'm hoping will help with things .... they arrived on Saturday so today is day 5 on them and as I'd hoped I'm sleeping better than I was before and my mood and heart rate are far more normal now. I'm taking 2 a day, one in the morning and the other about 40 minutes before bed. So far my experiment is working 😎

I've got the spine guy appointment coming up on May 10th and then round 4 of Ocrevus at Charing Cross on May 26th (which yes is highly likely to kill anything created by vaccine number 5 😐

Oh one thing of note - I've asked both my Doctor and my Neurologist to get me scheduled for Evusheld - it's a 'pre-emptive' treatment for the immune suppressed for - yes you guessed it Covid ..... I've said if I have to drive to Edinburgh for it I'm fine with that but would they please sort it - no news yet fro either of them despite a chaser email and asking my Doctor while he did my vaccine. Watch this space.....

Apart from that all is pretty good in my world.

Hope you're taking care of you 

T

xx