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 he 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