Transverse Myelitis & Me, With A New Addition!

Well maybe they have a bit but as I type I am back on the Snowdon Neurological Rehabilitation Unit where I first began this blog 2 years ago. 

I’ve not written for a while, mainly because life has kept me busy but also due to me not being able to put into words the feelings, events and emotions that have whizzed through my brain like a washing machine mid spin!

The last time I posted I had just been diagnosed with MS at an appointment with the specialist neurologist in UHS.

In the months that followed I spent a lot of time researching, reading, attending information settings and ultimately making the decision to start taking one of the many Disease Modifying Treatments/Drugs (DMT/D) to try and increase the amount of time between relapses and help shorten the recovery time from them.

After reading through all the information available on the MSTrust website and discussing with Paul I made the decision to starting taking Betaferon (one of the few Interferon b drugs). This involves me self injecting every other day into various sites on my body. I feel like a pin cushion and likely to spring a leak should I drink too much! My medication is delivered once a month by courier and I was taught how to draw it up and administer it by my lovely local MS specialist nurse. 

I have to have 6 monthly bloods checked to make sure there are no adverts side effects and have regular contact with my nurse should I have any concerns. 

Before I started the medication I had to have routine bloods taken and the results showed I was seriously iron deficient anaemic and had to be put on high dose iron before I could start the betaferon. There is nothing nice about iron tablets I can assure you!

In Dec 2016 I was also seen by a urologist at UHS as I still had an indwelling catheter  (IDC) and was told that, taking into account I am a wheelchair user, I should be referred to have a Suprapubic catheter fitted along with botox into my bladder (who knew it – botox for free, shame not elsewhere!) 

It took a further 8 months for me to have the procedure carried out at UHS and (despite the horror stories I’d heard) it was pretty plain sailing. I had a local anaesthetic, even though I still have no feeling or sensation, and watched the whole thing take place (except the big needle making the stoma site)

It has made life so much simpler as I no longer have it randomly fall out and it is easily managed in my chair. 

I had a relapse back in June/July which knocked me for six. I lost power and use of the right side of my body, which made self propelling a bit of a nightmare! I felt very let down by my body during that period of time and lost even more confidence in my own abilities due to needing extra help. Luckily high dose steroids and some help from the CNRT physio got me back to a bit of normal me. 

Bumble forward to October 2017 and things went pear-shaped. I was taken into hospital with exaserbated asthma. I had an emergency CT scan which thankfully ruled out any blood clots but highlighted that I had multiple rib fractures at various degrees of healing as well as a 14mm haemotoma on my spleen. I was then diagnosed with Parainfluenza and then 3 weeks later was diagnosed with RSV on top. Sick to death of viruses I can tell you!

After 6 weeks in UHS and not being moved other than to have personal care carried out I was referred to the Snowdon Neurological Rehabilitation Unit and thankfully I was accepted to be readmitted for a period of rehabilitation. 

I arrived back at SNRU on 2nd December and was greeted with hugs from a few of the staff who knew me 2 yrs ago. It made being on the unit again less of a scary experience knowing people and knowing what was expected of me and what I expected of them.

To start with I had to be hoisted for all transfers from bed to chair and vice versa. It’s not the nicest of feelings having to trust a piece of material to hold your weight (mine has shot up unfortunately and much to my disgust) whilst suspended from a piece of metal attached to the ceiling! 

The physios and staff here are bloody fantastic and spend a lot of time and energy helping you to overcome feelings like these and I slowly got used to it.

I had my timetable given to me and feom day one the therapists started looking at ways to get me transferring using various other pieces of equipment. 

Due to being laid in bed for 6 weeks, my strength in my arms and legs had deteriorated and I had to start building them back up to stand any cha ce of having successful transfers. With perseverance and a lot of help I slowly started to use the Stedy (A piece of equipment that you place your feet on, hold a hand rail and pull up to standing, then perch on paddles while moving to a chair/bed and lowering yourself down with control). I had to begin to trust that my legs would respond when pressure was put on them which is really hard to do when your brain doesn’t even know that you have legs attached to your body. Over 4 weeks (yep I was in here for Christmas!) the transfers got easier and I was able to do my transfers much more efficiently but still need hoisting occassionaly when extremely tired. 

One major thing that was noticed whenever I stood up was that my ankles overturned meaning all my weight was being distributed through my ankle bones and not the soles of my feet. This has become more and more of an issue and whenever I stand they cannot be corrected. This has lead to some very very upsetting, difficult conversations between myself, Paul and the therapists. Due to the way my ankles overturn it is no longer deemed safe for me to attempt to try to walk which has been my ultimate goal since admission. I will no longer be able to walk from my stairlift to the bedroom and vice versa meaning I have to face the long term issue of where I will sleep once home.

Not only am I now dependant on other people carrying out my personal care becaise of my exhaustion levels but I am facing having to have the garage converted into a bedroom for me with hoists and lots of equiment to enable me to continue to live in our house that is already adapted for our youngest son. How on earth do you get your head around something like that? We cant move for the reasons stated above, we own our own house which Paul has worked bloody hard to have. It’s where Adam is settled, minutes from his school and friends, it’s our home. 

I’ve always said I’ll never stop trying to get the best out of therapy and I never will but hen you are told that something so ‘simple as walking is unsafe and no longer feasible, how on earth do you move forward, stay strong and not become a mess? Ive cried so many times over this and can see no way to escape this and male my ankles magically do as I want. Splinting isn’t possible as the force my muscles give out to make my ankles overturn is so great it makes them cause indentations and pressure marks. 

I won’t give up trying to make life as good as I can. I have a family who mean the world to me and who I’ll never stop fighting for.

I am now at the stage of trying to do pivot transfers, using my arms to swing me from chair bed etc. It is incredibly hard work but it’s something I have to do to take the pressure off of others and gain some sort of independance and control back.

Next week I have a home visit with the lead physio and OT to try and see what can be done in the short term to keep me upstairs sleeping and how to make getting on and off the stair lift a real possibility.

It will be a tough and emotional day and i know tears will flow but i need to pull on my big girl pants and suck it up.

The fight carries on and as long as I have the love and support of my family I will bloody well continue to fight!

#tmandmswontwin #fightingformyfamily #tmandmssuck