IT'S BEEN A WHILE!!!

It's Been A While!

 

Hi everyone!

I hope you are all well? 

It's been about 6 or 7 years since I last wrote a post on here, quite a lot has changed and I needed somewhere to process it all.......so I've come back here!

We, Martin, my amazing husband and I, moved to a wheelchair accessible flat in 2015 & I can't believe we have been here over 8 years! We lost our two precious cats, Barnaby & Kit Kat but now we have a complete nutter called Rosie, a Persian cat who entertains us daily! 😻

It turns out that, as of 2023, I have been diagnosed with MS for twenty years, how did that happen? I also turned 50 this year and my wonderful husband, Martin and I celebrated our 25th wedding anniversary and after everything we have been through over those years - 28 from when we got together, it's been quite a year of reflection.

When I think back to my first symptoms of altered sensations over my lower back, down my legs and over the bottom of my feet, to today where I'm struggling to use my crutches, my left leg is very weak, it gets occasional spasms, I can't walk too far and I'm using a wheelchair a lot more of the time, to name but a few, it is quite a difference and not necessarily a positive one 👎

My left arm and hand are noticeably weaker, I sometimes have difficulty cutting up some of my food.
I've had trouble with my bowels for many years now but that was helped greatly by the Bladder & Bowel team. I felt I was lucky that my bladder seemed ok. Well that has changed now and I'm waiting on a referral back to the Bladder & Bowel service. I spoke to the GP back in May & a referral was sent so when I hadn't heard anything after a few weeks I phoned them, only to be told it was a 6 to 9 month wait for an appointment! What was I supposed to do in the meantime?  
Unfortunately we had to change our GP as our original one, who had been our Doctor for about 15 years and had seen us through my diagnosis of MS & then Menieres disease and had helped saved Martin's life by getting him diagnosed with Whipple's disease, retired.
Fortunately, now, we have a lovely GP, who prescribed me some water tablets so I'm able to manage it a little better until the long awaited referral!

I've had a couple of relapses in the past couple of years, one in March 2022 & another in April 2023. I've got a fantastic consultant who got me straight onto steroids, which I hate but they did help! I'd been having yearly MRI scans and after this latest one in April my consultant informed me that my MS has changed. I have new lesions on my brain & spine. It's very disappointing but at least it explains the new symptoms and deterioration. My legs have got worse, I've got issues, as always, with my pain, I'm struggling with my bladder & my mood has taken a dip.

I came off the DMD (Disease Modifying Drug) that I was on, Tecfidera & am now on something completely different called Ocrevus. It is another DMD and is an infusion but this one is given every six months. I am at the hospital for about 6 hours because they give you 3 infusions. There's one before & after the actual Ocrevus which are an antihistamine/steroid mix, this is to help you tolerate the drug & help with the side effects. I have mine done at a special unit in Plymouth and they are fantastic! I started in October last year - 2022 and so far I have tolerated it ok! 🤞

I am still having my Lidocaine infusion which I have been having every eight weeks over the past few years (unless the hospital can't get me in!) I find it really helps me for about six weeks & then generally wears off. It doesn't get rid of the pain but it makes things a lot more manageable! Unfortunately this treatment has become very successful & popular and the hospital isn't set up for the demand. I have been told that they are having to go to a twelve week plan now, which I am not happy about 😠 I definitely notice a difference once I'm over eight weeks & things can become unbearable. I am in discussions though & my GP is helping me to find a solution as the Lidocaine really helps me to manage my pain.

A while ago, when I was in a good place & really positive about being proactive, I decided I wanted to look at all the pain medication I was taking and to see if I could come off any of them. I was looking at how many tablets I take every day & decided things needed to change......if they could! Some of the things I take, like Levothyroxin, I know I can't stop taking but if there are things I could then I at least needed to try! I spoke to my GP as I would never try anything like this without their input. She contacted my pain consultant & a plan was drawn up. We started off with PreGabalin also known as Lyrica & I was taking 300mgs twice a day. I managed to reduce this one by half. I tried to go lower but my body couldn't handle it so I am now on 150mgs twice a day although in the future I might go back & see if I can revisit lowering that one further. I did manage to get down to 75mgs twice a day but then I had a fall & ended up with sciatica in my arm.....who knew that was a thing?! So now I am back up to 150mgs twice a day but one of my reasons for trying to come off these drugs was to see if they were doing anything for me & it turns out some of them were!

The next one I wanted to try was called Tapentadol or Palexia. I was on 300mgs twice a day. Again, I started the withdrawal slowly & with the guidance of my consultant/GP. I am delighted to say that I have completely come off that medication and I can't tell you how much it has changed my life........Genuinely! It really has woken me up, literally, but also to the impact that medication has on us & not always in a positive way. I thought that a lot of my issues were symptoms of my MS but instead, it turns out that some things were actually side effects of the medication. 

I really struggled with fatigue, which is a symptom of MS but what I hadn't realised was the impact the Tapentadol was having.  I generally wouldn't be able to get up before about 9am, on a good day, and I would be in bed by about 5 or 6pm. I came off the medication and now I am up by anywhere between 5 & 6.30am every morning and stay awake until about 9 or 10pm......and this is a daily occurrence! It has blown my mind & I feel like a different person!

As always, throughout all of this, is my amazing husband, Martin. I wouldn't be managing at all if I didn't have him & I don't know how I got so lucky!

Having celebrated 25 years of marriage I realised that we'd only been married for about four years when I got my diagnosis and rather than bolting for the door, Martin has been by my side every day. As I become more disabled he is having to do more and more for me. I wish people could see just how much as carers are really the unsung heroes of our society.

 

Well, that's my update for now but I hope to be writing more regularly again now so it would be great to hear from you all and see how you are all doing!

 

Sending out love & very much needed Rosie cuddles! 😻

Big hugs XxXxX 💕