Christmas, PIP, New Car & Vaccine No4

 3 weeks have boomed by again, sorry about that.

So what's new in the Doust house ? Well I logged into my banking app on Saturday to pay the lovely man who valets our cars and there was far more money than I'd been expecting to be there - I had a slight panic thinking work had paid me early and I'd accidentally spent WAY too much on Christmas and knackered myself until the end of January. A quick check on transactions in and there was a payment from DWP PIP - I GOT APPROVED and for the higher rate too 😀

It means I can get a mobility car with a hoist to get RoboBob in and out myself without having to always have Gareth with me or ask lovely people to help me. I am beyond thrilled - it will make such a difference I will be fully independent again 😀 such a huge weight off my mind.

My Physical trainer appointments are cancelled for the rest of the month, the poor man has covid so I'm doing daily tests to check I've not got it - today is day 5 and I'm all clear thank goodness. 3 vaccines and the thought of catching it still scares the crap out of me.

On the subject of vaccines, I've had a letter through saying because of my Ocrevus treatment I should have a 4th vaccine - it has to be 3 months after my 3rd one so that will be due January 11th but I'm booked in at the end of January to have it at my doctors clinic. I was hoping for a Moderna one this time - call me daft but it would give me a 'full house' at vaccine bingo and that amuses me. Sadly I'm not going to get my full house because Dr B has told me it's 99.9% likely to be another Pfizer *shrugs and doesn't mind at all*

I also got a letter yesterday saying that I'm being sent a PCR test kit for home use at some point soon - again a 'vulnerable' person thing (If you're not in England that probably sounds like I'm talking code - a PCR is the name for the one that you have to have done for permission to travel or to confirm infection after testing positive on the usual home Lateral Flow Test that we have here in the UK)

Work has become very quiet this week, a lot of people off in the run up to Christmas but it's really given me a chance to catch up on paperwork and get my inbox cleared down so I can hopefully start the new year without wincing and wondering how I'm going to even begin to clear down 100's of mails.

I had another MRI on Sunday at Hammersmith hospital.The appointment was at 12:45 and I had arrived by 11:15. A nice lady buying a parking ticket helped me unload Bob from the car and I got up there well over an hour early but I'd rather wait around than be late. Happily they called me straight through, the did my back (which the previous MRI didn't cover) I was done and out the door before it even got to my appointment time and there was a nice man in hi-vis setting up a lifting platform outside the hospital so I told him he looked big and strong and could he help me put bob back in the car - result.

I got home nice and early which gave me a chance to pop back to Ford and order my mobility vehicle - it won't arrive until the end of April but they'll sort out extending the agreement for my current car - the Tourneo through until it gets here - happy days 😎 

All the christmas shopping is done - if you've been reading this a while you'll know this is VERY unusual - I'm usually flapping around in the last week before Christmas because I've forgotten stuff. The meat order to go up to Halifax is due for collection between 12 & 1pm on the 23rd. The dogs are booked into the private hire dog field in Halifax on the 24th, 25th and 26th for a run (it's on the top of a bloody big hill so it's probably going to be extremely cold and windy but they'll have a good run and get some energy out of their systems)

We both off from Thursday and are not back into work until January 4th - so after tomorrow I'm taking the rest of the year off - I really do like saying that - shame it's not the summertime really 😂😂

The Ensuite is finished (well the painting isn't done yet but thats's scheduled now for the end of February and pretty much the whole house is being done all in one go) the non-slip shower tray is an absolute game changer I feel safer when I'm in there for the first time in a very long time.

All things considered life is really good right now (I'm assuming that by Friday I'll still be testing negative for C-19 and Christmas can actually happen - the optimist in me is saying it will all be fine) 

I hope that you have a chance to enjoy friends and family or just have a rest (both would be better)  over Christmas time, whether you celebrate it or not. 

Take care, stay safe and love and best wishes from us

Tracy

xx

Latest Ocrevus, the bathroom is being fitted and Blog passes 1/4 million views WOW

I had my 3rd round of Ocrevus last Thursday, they did the fast infusion and everything was very uneventful really. I had a nice long snooze thanks to the antihistamine, played some candy crush games, a bit words with friends and watched Skyfall again on my iPad.

It's funny how I always forget that the body really doesn't like having extra stuff pumped into it when it's not already 'leaking' somewhere. I always get that horrible spike in the head headache afterwards for a few days - this time 5 days. I guess it's a little like when someone has a child and says afterwards they'll never do it again but they do - they forget the unpleasant and do it again because it's worth it.

It's horrible but it is what it is, I guess I'm writing this in the hope I'll remember in May next year when I have my next round to have paracetamol in the house so I'm not hiding in the dark, feeling sick and flinching every time there's a noise for 5 days 😆😆

The team arrived on Monday to refit the ensuite bathroom Monday so I spent the day in the lounge with the dogs while Demo day went on above my (already sore) head. The non slip ceramic shower tray went in yesterday and the floor was tiled and today the tiles on the walls are going up. It already looks so good and it's going to be so beautiful when it's done. 

I can't wait to just walk into the shower and just do what I need to rather than struggling to get into the bath in the other bathroom, slipping and sliding all over the place and being terrified for my safety. I've called first dibs on using it 😎

In other news I saw a personal trainer on Monday (self funded) I was pretty terrified if I'm honest, before all the MS and spine problems I liked exercise, I was strong and I knew how to do things without making things worse but my confidence really has taken an absolute battering in recent years so I was scared about what he'd want me to do and what the price for it would be. He had me doing chair based exercises rather than standing and moving around. Lots of stretches and resistance band movements and holds. The hour flew by and he was  so patient and kind. I'm actually looking forward to the next session with him tomorrow rather than dreading it. 

My PIP interview has been done and is now back with the team for review. It will be another 8 weeks or so before I hear anything but I hope that they look favourably on it. A mobility vehicle with a hoist so I can leave the house to do things on my own - things like being able to go to work or attend hospital appointments without always having to have Gareth with me to unload and load RoboBob would be life changing.

Lastly I want to thank you for reading this. 

I know it's more Adrian Moles diary for a middle aged woman with MS than it is an MS / Lemtrada / Ocrevus 'document'. I guess I never really wanted it to be anything other than what it is. A continuing record of how life is with MS, how treatments are and how they effect (my) everyday life. I wanted it to be a true life real time record - an ongoing record (sadly so many of the blogs that inspired me at the start of my MS journey have withered away) that isn't just for the good times or the bad times but for all the times.

When I started writing this I just wanted to be able to help a few people learn about this MS life, Lemtrada was a newly approved treatment and Ocrevus was just being concieved. It was important that information and experiences were shared to help others to make an informed choice by reading about other peoples experiences. The origins of these treatments were for horrible cancers and other nasty conditions - people called them Chemo (I did at the start) and that made people afraid. 

Social media platforms are great for bringing people together who have conditions like MS, treatments like Lemtrada and Ocrevus, or even just cooking enthusiasts - information sharing is so easy and readily available at the touch of a button or a screen. One of the very human things about social media resources is that they often have far more negative content that positive about a condition or a treatment for it. It's simply reality that people are more motivated to share when times are hard, when they are scared or in a dark place. 

It's harder to just keep saying 'it's okay' 'I'm good' 'nothing happening here' ...... there's a level of guilt associated with it, you don't want to seem like you're bragging or somehow diminishing the struggles of others when that's not what you want to do at all. 

Both sides are important to share and important to read when considering what is right for you and that is not going to be the same for everyone but it's about having as much information available to help make that choice.

It's not all roses, if you've read this all the way through or been following it for a long time (you deserve a medal or something for that) life has changed, it's different now, its harder than I ever imagined it would be in some ways but it's also really great in other ways. I'm naturally a positive person, the glass isn't half full or half empty, the important thing is the glass is refillable with a wide variety of drinks and that I can choose what I want in it.

Dagnammit I'm on a soap box again aren't I - I'll stop 😃

It's taken nearly 7 years but last week we hit the magic 1/4 million views mark and I hope that it's helped even a tiny fraction of that number of people - even if it's just helped you sleep because it's quite dull and poorly written.

Be strong and stay positive 

much love

T

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

T

xxx

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 😂😂😂

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

xx

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 

T

xx

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 😎