Friday, 19 November 2021

Upcoming Ocrevus, RoboBob, Yet another MRI, PIP interview and stuff

 Next Thursday for the next round of the good stuff, I'm all prepared, I've got some anti UTI meds on the go this week (the urologist suggested this) so that I don't provide a funky pee test when I get there. I'll have enough Mini Cheddars to feed a football team and plenty to watch on my iPad for the day (assuming I don't sleep through it all thanks to the antihistamine 😂)

RoboBob arrived and is doing just what he needs to. It's nice to be able to get out and about again rather than restrict myself to small outings with minimal walking - And I will admit I do get a kick out of watching him fold and unfold himself.

I'm booked for another MRI on December 19th. I had the pre-ocrevus call with the nurse to check I was ready and I asked about the MRI results (I'd already seen the one liner on my online records and spotted that there was something odd) The nurse told me my brain, neck and spine all showed no change and I queried how they knew my spine was fine since they didn't actually do that. So back for a full back and I still want the neurologist to actually talk me through it not a nurse reading comments back with no context.

I have a PIP interview on Monday morning (fun start to the week) I've applied at last because with the back problems on top of the MS I now can't load the power chair into the car myself. I need something with a hoist mechanism so I can get around alone and use the wheelchair without being dependent on having Gareth or another reasonably strong fit person with me and that requires a motability vehicle, I'll probably ask for hand controls as well since I don't entirely trust myself with the pedals these days (my ankles sort of roll a little rather than my foot staying square to the pedals if that makes sense - it bothers me on short drives so long ones are probably going to be worse)

We're off to Yorkshire for Christmas this year and for once not doing the Wales part as Aunty Kathy is going away to a swanky hotel with her friend to have a nice chilled one which I'm sure she will enjoy. Just need to sort out our timings / shopping / gifts and a dozen other things - but I have sorted out the dog park for the pups so I'm not a complete failure 😊

Winter is coming here in (not so) sunny Berkshire. The heating is on, the winter menus are being prepared - the comforting winter stews, casseroles and loaded Mac N Cheese. 

Life is good. Hope you're doing well, talk again soon



Friday, 29 October 2021

I take it all back Oak Furniture Land

 So the end of the week rather than the start but WOW just WOW

They've restored my faith in humanity

Our delivery was scheduled between 10am and 1pm. 

  • They called at 08:45 saying they'd be a bit early and arrived at 09:15
  • They were in an appropriately sized Luton Van
  • They unpacked it all and brought it in
  • They set it all up 
  • They took all the packaging away with them
I should add I'd paid for the premium delivery with unpacking and setting up but honestly it was worth every penny.

Winston however doesn't seem to understand the message on the cushion in my seat 😂😂😂

And before it sets anyone else OCD off (mine went nuts when I saw the first picture) the painting has now been straightened up 😂😂😂

Wednesday, 27 October 2021

Comedy, fun, plans going wrong and the death of Bob

 I should start with the death of Bob .... 

Bob was the name I gave my electric wheelchair. On Saturday / Sunday Bob suffered a fatal chassis injury and is to pinch the word from the film Tango and Cash .... FUBAR 😞 The part of the chassis attached to the back right wheel sheared clean in half and there's just no fixing it. 

I am now £1,699 poorer having purchased Bob Mark II - I'm really hoping that he makes it here by the end of the week because going without over the weekend will seriously restrict the amount of fun I can have.

The sofa is being collected tomorrow by a nice man who's going to give it a new home and the 2 new reclining sofas are arriving on Friday (fingers crossed - it's coming from Oak Furniture Land and they've not had great success in the past in making things arrive down our lane in an appropriately sized vehicle and it was due 3 days ago so Friday is already a delay)

The En-suite fitting so we finally have a usable shower was supposed to start this coming Monday but the anti slip shower tray hasn't turned up so that's now put back to the end of November - another month of trying not to fall and smash my brains out trying to get in and out of the bath in the main bathroom for me ....... 😢

I've got the follow up appointment with the spine guy next week after the procedure I had. I suspect that this is going to necessitate another type of treatment - Facet Joint injections ... they don't sound fun at all.

Christmas is coming, everyone is getting an orange and a mince pie each this year since I've spent all my savings on Bob II - so that plan has all gone a bit anti gravity breasts.

We've been out to a couple of comedy gig in the last 2 weeks - at proper venues not online ones. Jonathan Pie for the first one and Scott Bennett for the 2nd (although the disabled ramp at the Scott Bennett gig is the thing that killed Bob so perhaps ultimately not going to be quite so fondly remembered) 

I have an appointment on the 8th to get my MRI results from the weekend before last - then we will see if I've had some activity and discuss what it means in terms of continuing with Ocrevus, maybe back to Lemtrada, or maybe even the big one if something is happening.

In the interim, life is good roll on Christmas and a well deserved rest.

Hope you're enjoying life


Wednesday, 29 September 2021

5 weeks in one post

Apologies for the absence, a lot has happened, but also not a lot if you know what I mean.

My back procedure was last Monday, very uneventful even if I did spend the 24 hours leading up to it panicking and not sleeping (possibly made the sedation far more effective) My lower spine feels less squashed now if that makes sense? I'm expecting a follow up appointment at some point in the next couple of weeks with the Orthopaedic guy to see where we go from here. 

MS wise, I've dropped an email to my Neurologist because I think for the first time I'm experiencing what is known as spasticity (awful word) the muscles in the back of my left knee are incredibly tight and it's making walking very uncomfortable. I'm doing some regular stretching to see if I can loosen it up and that might be working a little. Since I've not had this previously I've asked if this is possibly related to relapse activity and asked would an MRI be wise .... He came back and asked was it still happening and that he'd booked me an MRI - Hammersmith on the 17th 😎 I do love that he and the team are so very great and open to just having me pop an email across rather than faffing and waiting months for appointments.

Oddly I've also had to see a doctor this morning because the same knee started swelling up last night and because awfully painful around the joint and down my leg. They've done a blood test to check for the usual suspects (maybe DVT ???) and apparently I'll be hearing from someone later today / tomorrow

I've had my annual full jab already and it was gloriously uneventful as always apart from the sore arm and feeling a bit grotty the next day (same as the covid one)

I'm waiting to be invited for my 3rd covid jab (the booster I guess) which I rather hope will be within the next 3 weeks so it's got time to work before Ocrevus round 3 at the end of November.

We have a couple of new reclining sofas coming in October which will make lounging in the evening a much more comfortable affair, and the ensuite is being done on November 4th which will be very exciting. I'm just looking forward to being able to shower safely with confidence instead of feeling like I'm going to fall and injure myself in the other bathroom as the shower is over the bath - stepping in and out and sliding around when I'm in isn't a fun game.

I've also applied for PIP for the first time ..... according to all the horror stories I've seen this should be a horrible long drawn out and painful process which will ultimately end in heartbreak and disappointment - but hey you never know, it might be okay. If it's approved then I should be eligible for a vehicle under Motability which would allow me to get a vehicle which has a lifting hoist for my wheelchair which would mean I'm far less isolated and can get out an do more without needing Gareth with me to do Bob loading and unloading duties.

This weekend we have Gareths parents visiting so hopefully lots of relaxing, lots of lovely food and just catching up with life.

Apart from that my hair is even longer and life is the same.

Hope you're well 



Monday, 16 August 2021

The post of 2 parts - Before and after seeing the orthopaedic surgeon

 This one is deliberately going to include a thoughts before / thoughts after update.

Part 1

I see the orthopaedic surgeon at 7pm this evening (it's fun that when it's on BUPA that they work late to catch up after taking a holiday)

I'm still using the Inversion Table for a minute or so a few times a day - only when I start feeling pain in my lower back. I haven't taken a single Tramadol since 18:30pm on August 5th which is amazing, I have taken a couple of co-codamol twice now (this Saturday evening and last Saturday) but both days I had been on my feet for far longer than I usually am.

I keep saying I'm not in pain, but that simply might be that I've hurt for so long that the lower grade doesn't really register as pain any more. My lower back still feels 'squashed' if that makes sense like there's far too much down there that should be better spread out but honestly it's not terribly comfortable but it's not painful (okay you're probably thinking I'm slightly mad saying that)

He's going to quite surprised that I can lean backwards quite a bit further than I could 3 weeks ago (I'm not going to be doing backwards walkovers any time soon) a few more inches but hey a win is a win and I will take that. I do wonder if he will want another MRI to see if the inversion has made significant change to what it all looks like in there before deciding what happens next.

The weekend has been fun lots of time at the dog park with friends and the dogs they brought with them. Friday, Saturday and Sunday (poor Winston and Bella will feel very hard done by this evening when it's just the two of them) Kirsty brought the dog she's pup-sitting Friday and Sunday while his people are on holiday - a super sweet poodle cross boy who's fallen in love with Bella as they all do. And Claire made it up to the park with the Beagle boys on Saturday. Some sunshine, fresh air and a change of scenery seemed to really do her some good.

There was a half hearted attempt at a street food festival in Reading yesterday that we pootled around for a while. We had a few nice eats and found some amazing artisan coffee but sadly I think plague times has had a lot to do with the number of vendors who turned up.

Part 2

RESULT - it's NOT spinal Stenosis - there is some arthritis and some facet joint degeneration but he can fix that .... will get a call later this week to go in and get knocked out for an epidural where he will put some stuff into my spine as a first phase .... likely to need further injections for the FJ after that but it's a bloody good result and he's REALLY happy about me getting the inversion table .....

That definitely deserves a G&T or 2 😎

Tuesday, 10 August 2021

First video in a while

 It's been a while (as you can tell by how much my hair has grown since the last video)

Quick in person update, showing the inversion table that's transformed my back problem

Wedding anniversary, what's going on (or not as the case may be)

General waffle :) 

Friday, 6 August 2021

Sometimes it's other stuff and not MS

 I think I'm officially old 😪

So that appointment with the Orthopaedic surgeon ...... I've had a full spine MRI this week (not a new experience for me since I have at least one a year for the MS - although having it done privately and counting the birds, kangaroos and jet skiers on the screen listening to the radio in the private Rutherford Centre made a nice change)

He's pretty convinced I have something called Spinal Stenosis which in layman's terms is the vertebrae in my spine are all crunched together and compressing nerves and stuff - certainly explains why I've been in agony and on the Tramadol.

I'm back to see him on the 16th for the results (he's taking a holiday in the interim - how rude 😂) but a little internet research (always a dangerous thing) led me to inversion tables. I think I've mentioned before that I was sure if someone would just hang me upside down like a bat for a while I'm sure it would all sort itself out. Turns out I might have been right .... the table arrived was assembled yesterday and first used last night and then again this morning - I've not taken a tramadol today (although I have put the washing out and brought it in and put it out again a few times in-between rains storms so I'm a bit touchy right now .... might go dangle myself for a few minutes when I'm done here)

I'm hoping if the inversion table works out that I might not need surgery on my spine *crosses fingers and anything else that will physically cross as well*

I guess it's a lesson to me, see a doctor get it fixed, I've spent a long time assuming it was MS (funky gait making my back hurt) or arthritis causing it (and to be fair Stenosis and arthritis are closely related) but I could probably have had something done about this a year or 2 ago long before it got this bad.

In other news - I've lost a stone and a half in weight and am on my way to 2 stone and its getting me compliments when I see people which is very motivating (if the ruined back wasn't enough motivation) 

It was our 10th wedding anniversary on the 30th .... Tin is the traditional gift, we both came up with nice inventive gifts for each other and had a lovely meal out at a Lebanese restaurant in Newbury to celebrate along with a 4 day weekend to have lots of lovely sleep lates.

Apart from that it's all been work and a whole lot of not a lot really.

I hope you're well and taking care of you xx