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

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...