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