Wednesday 8 May 2024

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

Tuesday 23 April 2024

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 


Monday 11 December 2023

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


Sunday 30 July 2023

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

Monday 27 March 2023

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

Wednesday 30 November 2022

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

Wednesday 19 October 2022

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 



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'v...