This past week has been an eye opener. A week I would like to kind of forget.
To say it’s been an emotional week would be an understatement. I’ve cried so much I’m surprised I am not permanently red faced with puffy eyes. Emotions seem To have got the better of me and all I want to do is biry my head in the sand and come out when it’s all over
None of my tears have been due to staff on the ward but, in the most part, due to me having to accept a bit of a reality slap in the face and I don’t think I was quite ready for it and boy did it hurt.
There is nothing right now that I want more than to be at home with Paul and the boys but it needs to be safe for everyone not just me.
I started the week reasonably upbeat for me after having a giggly night sat night with one of the other patients who, by the power of her smile and her true understanding, has lifted me up on some of my toughest days.
I took on Monday with a refreshed outlook and really put everything into trying to transfer from my bed to my chair and back using the pivot method. It is incredibly hard work trying to move your body from one place to another using your arms to lift you and move over whilst trying not to miss my wheelchair or the bed when I need to pause briefly. I suffer from the little known condition of ‘short armitis’ so I can’t make my transfers as smooth as I’d like. Being short really does have some disadvantages sometimes!
So I then rolled into Tuesday absolutely shattered as I hadn’t slept well due to stressing over what I was going to be doing in the morning.
It was time for the dreaded home visit. The time in your admission when you go home with a Physio and OT and look at all th stinking stumbling blocks that will hold up discharge home.
The last time I had a home visit in my 2016 admission, I had a complete meltdown due to being unable to bum shuffle up The stairs (‘short armitis’ strikes again!) My parents came to my rescue and to save me added stress they purchased a stairlift to get me up and down the stairs with minimal effort. The humiliation and sense of failure I felt that day still haunts me and remembering all of this was making the home visit a very nerve-wracking emotional time. The therapists who accompanied me home were so lovely and knew I was dreading it from the second I woke up.
When I got home I was pounced upon by the dog (Finn) and it was so nice to have that slobbery cuddle before having to face my biggest fear . The stairlift looked like an impossible target but I knew I had to try my hardest to get my bum onto that seat to enable me to get upstairs. After much cursing and a lot of self-critical thoughts, I made that first attempt to get from my wheelchair onto the stairlift seat. What was an every day normal task prior to admission suddenly became the biggest mountain I’d had to date. With the physio one side of me and the IT behind me I managed to push myself up just high enough to be able to perch on the edge of the seat. I then managed to wiggle back and off I went up the stairs for the firat time since October! A huge feat in itself but my moment of feeling proud vanished in the blink of an eye when I reached the top and reality slapped me in the face incredibly hard. Facing the stairlift was the open door of my eldest son, Adam, bedroom. It was seeing this that I suddenly realised that I wasn’t going to be able to tuck him into bed again, not be able to give him a kiss goodnight or poke him to wake him up for school. My inability to be able to take a few ‘simple steps had been wiped from wiped my skill set. I had to suck it up and try not to show my crumbling emotions to Paul and the therapists.
I then had to make an attempt to use a pivot transfer from the stairlift to my new mode of transport upstairs, the glideabout commode. I felt humiliated, let down by my own body and had to fight back the tears whilst trying to swing myself around, with the grace of an elephant, onto the seat of the commode – which decided it didn’t like me and shot off backwards.
I was then pulled into my bedroom and thankfully was given a breather and didn’t have to face another transfer. Although I could have done with a rest on the bed after all of that!
I then had to do it all in reverse to get back downstairs and get back into my chair. It was at this point that the decision was made to get 2 pieces of equipment (rotunders), 1 for each end of the stairlift.
This piece of equipment is a totally new method of transferring for me and in all honesty scares the living daylight out of me.
It involves me having to place my feet on the base plate where the grey footprints are and then with every ounce of strength I have to pull my self up to standing using both arms and relying on my legs to actually hold me upright. My right arm is nowhere near as strong as my left and I really do not trust it to pull me up on a piece of equipment that wobbles around like a weeble board.
As you all know, I have no sensation or feeling in either of my legs and in order to use the rotunda I need to rely on my legs to hold me in a straight position and not give out on me. I am finding this incredibly difficult to get my head around but I know that if I do not master this when both fully awake and tired then I won’t be able to go home and the alternative options are a definite NO in my head and heart.
On the ward I have started to use it but I end up in such a state that I don’t breathe when I pull up or whilst o am on the motion of beinh turned 90° to sit in my wheelchair. It really makes me panic which I know it shouldnt.
I’m terrified I’m going to fall and then all the horrifying thoughts of ‘What if I fall here in hospital?’ ‘What if I fall when trying to transfer downstairs at home?’ ‘What if I fall at the top of the stairs?’ Once these thoughts start whizzing through my head I panic more and then I just end up shutting my eyes and praying that I survive without a fall.
The majority of the staff are so understanding and help me when I am at my strongest to do the best I can but they recognise that when i am tired I just can’t do it safely and in all honesty I don’t think they need any additional paperwork to be dealing with if I fall.
I have said that I would much rather be confident and at ease during my strongest times before tackling it when I am tired and more at risk. I know I need to be able to do it in both situations but there is time for that.
Anyhow the majority of my week is been spent sleeping, doing physio and keeping company with another patient (Wendy) who I have had the greatest pleasure of coming into my life when she did. It sucks that anyone should have to use this amazing facility but we’ve really clicked and become good friends.
I really should spend more time learning how to use this blog platform. I’ve just spent 20mins trying to work out how to get rid of the blue quote background!!! That’ll teach me for not using it enough!
Any way I have had a few positive moments in the week. My lovely friend Mel came and took me for a mooch around Tesco and my friend Sharon popped in after seeing her aunt (Sharon lives in London and we met when I was on D5 at UHS and she was caring for her aunt Dee who was opposite me).
She bought me a beautiful Orchid to cheer me up. I’m just hoping I don’t kill this one like I’ve killed my other plants (I certainly don’t have green finger!!)
Anyway this week is a new week. I’ve got plenty of physio, a hospital appointment for an abdominal ultrasound (to investigate the lesion/haemotoma on my spleen), a goal planning meeting to see where we are all at and see how social services are getting on ‘re carers etc and then hopefully visits from my babies and hubby as I’ve not seen them this weekend due to Lewis being poorly & back on oxygen.
Time to sign off and go and bury my head back in the sand until Monday morning.
TTFN
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Transverse Myelitis & Me, With A New Addition! 