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