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Today I am feeling pretty peed off with my legs. It has really got me down and I am so flipping frustrated it’s annoying me.

Every Friday in the big gym we have core group. It is pretty much as it says on the tin. We spend an hour with the rehabilitation assistants (RAs ) and work on strengthening our core muscles. These muscles are key to doing so many things like standing and walking.

Now I’ve pretty much worked out how to do a pelvic tilt. It’s not easy when you cant feel the lower half of your body but I can now just about get it right every time I do it.

Doing a pelvic tilt then leads on to doing a bridge. I hate this part of core group. No matter what I donor how hard I try, I just cannot get my bum to lift off of the plinth. It has driven me mad for weeks but today it made me angry.

I was going red in the face trying to get my legs to lift my bum but nothing would happen. In the end it took the two RAs coming and physically lifting me up for my bum to move off of the plinth.
I felt so embarrassed and ashamed that I couldn’t do it on my own.

After failing at that so miserably we moved on to knee drop outs. This is where you lie with your knees bent up and then slowly and controlled move one knee away from the other whilst keeping the other knee still.
Well, I can keep my knee still as I can only get my other knee to move about 2″ away from it. It’s ridiculous. Neither knee will move on their own no matter how much I focus on moving them.

Then we moved on to clams. This is lying on your side with your knees bent up and hips in line with a straight spine. You then lift your top knee up, away from the bottom one. For me my left knee is much better than my right. I at least managed to make daylight appear, even if it was a brief glimpse.

We ended the session there and I  left it feeling rubbish and disheartened.

I had such high hopes of my therapy having a massive impact on the way I mobilise and care for myself, instead I’ve been struggling to meet even the easiest of goals.

This evening I struggled really badly to get to the bathroom using my walking frame. It took so long to get there. After a sit down on the loo I decided to try and walk back with my frame. The HCA asked if I was sure as she knew I was shakey but stubbornness and stupidity told me to go for it. 
I think I managed 4 maybe 5 steps before wobbling so much and trying to hold back the tears that I had to sit back in my wheelchair and admit defeat.

I hurt so much but there is nothing I can do about it till 11pm and my oramorph hit.

My legs won the battle. They aren’t working and no amount of trying today was going to change that.

Here’s to tomorrow and Physio at 9am. Hopefully my legs might play ball for a bit. Who knows. I sure as heck don’t

Time to munch on some pineapple and get into bed.

SN Mum

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After the disastrous home visit last week the decision was made that no matter what was to happen with my recovery, a stair lift was the only way to get me upstairs and enabling me to get into my own bed and to be able to kiss Adam goodnight.

Thanks to my amazing parents, Paul & my mum went to test drive a few different stair lifts on Saturday and chose and ordered a Handicare 2000. This piece of equipment is going to enable me to do normal things that families do – go to kiss kids good night & tuck them in, sleep in my own bed, chat to my husband without having to coordinate time to talk.

It is my parents generosity that has lifted a huge weight off of my shoulders and put back the reality of coming home!!!

Whilst the stair lift is a huge part of getting me home, it isn’t the only thing. I’ve still got goals I need to meet in my therapy and there is the ever looming neurologists appointment, which I am in a way dreading.

Home is getting closer and whilst I can’t wait to be back with my family I am also dreading it. I’ve identified that I felt like a spare part when I did my home visit, I also felt very much in the way.

I know it’s just the nerves and it wasn’t really like that but it did feel very strange.

I guess it’s another step in my journey to manage #Transversemyelitis

SN Mum

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I’ve been sat here today looking at how my journey with #Transversemyelitis has lead me to cross paths with some amazing inspirational people.

I met a lady who had a tumor on her pituitary gland and had successful surgery to remove it and was such a bubbly encouraging person  and left a mark in my heart.

I met a lady who’d had a stroke and was determined not to let it beat her and had the most brilliant sense of humour and spark for life

I’ve met a lady who has Cauda Equina Syndrome who despite having no feeling in her right leg and has faced it head on, adapting the things she does to remain fully involved in her children’s lives. She has tackled other side effects with determination and strength despite being made to feel sick and generally unwell. I’ve only known her a week but she has been a huge support and reassured and encouraged me when things have been tough.

Then there is Jordan. A 19 yr old lad who after the most horrendous accident has been left with a brain injury that is having a huge impact on his life. His drive and determination to keep succeeding at what he does is truly inspirational. He has this deep hearted fight for life which pushes through. I mean at his worst he was ventilated via a tracheostomy and had many surgical procedures to try and save him. To look at him now is truly amazing.  He is now walking, talking & moving on to the next stage of his recovery in his journey to independent living.

It’s so amazing how meeting people with very different injuries have affected me and inspired me to do all I can to be the best mum and wife I can be despite my illness.

It’s thanks to them that I keep on fighting to better myself and be the person I want to be not what the illness has done to me.

SN Mum

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My hands are a nightmare at the moment. Even typing this is a struggle. They feel odd, the tops of my arms are burning and my shoulders are hurting like hell. My fingers are numb and I’m struggling to hold pens and picking up cutlery is difficult.

I had to admit defeat and ask another patient to cut up my dinner as I couldn’t cut it up let alone use a fork.

It’s hard work self propelling a wheelchair when your hands and arms are burning like hell.

It’s really frustrating just how much we take for granted when using our hands.

Everyday simple tasks aren’t so simple any more and it’s driving me mad. Can’t open things, hold anything for any period of time, doing buttons etc!

Add in the problem that I rely on my hands and arms to hold me up when using my frame to walk and I just end up in agony. Feels like all the muscles in my arms and my shoulders are burning.

I’m so fed up of all this now. Been in hospital for 3 months and it is starting to wear thin that I’m not improving as I’d hoped, as my husband hoped.

I really hope this nightmare is over soon.

SN Mum

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Do you ever get days where you are feeling really low yet you’ve no idea why??

I’ve been in that mood lost of today. I’ve no idea why I started feeling bleurgh but it’s been lingering around all day.

I went to core group this morning, I wasn’t meant to be but I took the place of a patient on weekend leave, and yet again failed at doing a bridge. In 11 weeks I have busted my gut to try and improve myself yet I still can’t do a bloody bridge!!! I normally end up being given a different task to do but not today. Today I just had to keep trying. I just can’t live my bum off of the bench.

I guess that probably triggered my mood to drop off.

I should have picked back up again after I managed to walk from the easter Egg table (yes we do have a table of easter eggs in the corridor that are raffle prizes & it’s so so tempting!) to the dining room doorway. I did this with my zimmer frame & my contraption known as a MUSmate. It was extremely hard work and very painful and incredibly tiring but I managed it in my own time.

I should be jumping for joy but I just keep thinking how I used to be able to walk a fair distance with no help at all.

Everything has gone belly up and my body just won’t do what I want it to do. 

I’ve been told today that I have come so far yet I just can’t see it.

All I can see is a fat me sat in a wheelchair with a body that just won’t do as I tell it.

I keep dropping things because my fingers are rubbish, my legs keep shaking and jerking, my body still has no sensation from my bra line down.

All I want is to see my boys and be home with them.

It’s been hard knowing they were all at home today doing stuff I should be doing. Paul took Adam to get a headset for his xbox with his pocket money – I should have been there.

I confessed to one of the HCAs that when I did my home visit on Tuesday I felt like a stranger who was in the way. I just didn’t feel like I had a place within that family unit. It scares me about going home and being dependant on people, mainly Paul and Adam, being in the way and just not belonging there.

I know I’m over thinking everything but I just can’t help it. I haven’t even slept in our new bed yet!!

It’s a rubbish situation and I know deep down I’m making small steps (excuse the pun)

Oh I just hate this whole situation and all its done to my family.
They’ve all been amazing and I just feel like I’m letting them down.

It’s driving me bonkers tonight.  I also think that seeing weekend leave written on my timetable yet I have no weekend Leave planned (nowhere is suitable for me now other than NH & that’s not till June) has left me out of sorts. 

I’ve even been time tabled in for a physio group tomorrow afternoon even though they know I can’t do sat and sun pm ad it’s my only time to see my family each week.

Arghhhhhhh bed I think and a whole new day ahead tomorrow including a visit from my dad who’s taking me for lunch and then Paul, the boys & my mum will join us for the easter tea party & raffle at 3pm.

SN Mum

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Today was my first home visit since I fell ill in January.

The OT and Physio took me to my house to see what equipment I need when home and to see how I got on attempting the stairs on my bum.

Well from an access point of view it was a bit difficult getting over the lip of the door but I made it through.  I was able to manoeuvre around the ground floor in my chair with little problem. From an equipment point of view I’ll need a few bits in the wet room to help my independence but they are minor in the grand scheme of things.

Now the stairs. For the past week I have been learning to bump up the stairs on my bum. In the gym here they have rails either side so I was able to poorly pull myself up once or twice on a step.
Now transfer that to home. I was a tiny bit confident that, although slow, I would be able to make it up the stairs on my bum. How wrong was I??!!

The stairs at home are much deeper and steeper than the ones in the gym.
From standing on the floor and attempting to sit on the third step I realised that this was going to be far more difficult than I had hoped. With the OT pushing my legs and the Physio pulling me top half I made it onto the step. It was exceptionally hard, pushing on my hands and then on my knuckles to try and get some height. It really wasn’t happening.
After 2 attempts they both looked at me and said that with all the will in the world that I wouldn’t be able to get myself upstairs using my legs or my bum.

My only way of getting home and getting upstairs is to get a stair lift.

I’ve not cried so much in a long time. I really had hoped that I’d be able to get upstairs under my own body power. 
My legs are too short and not strong enough, my arms aren’t strong enough, my whole body has fallen apart and there is nothing I can do about it. 

Now as a family we have to try and find the money to get a stair lift installed. We’ve been told we are looking at £4500 for a new stair lift. Money we just don’t have. We don’t qualify for any benefits because my husband works hard and we own our own home. We’re assessed as a couple not as individuals.

Life really is shit right now but yet again I have to suck it all up and just get on with it.

Oh joy

SN Mum

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Friendships are key when you are going through a really tough time.
They support you, make you smile and get you through each day with a quick message or a visit.

I’ve got one friend, Mel, who in the past 13 weeks has visited 2 – 3 times each week and messaged me every day.
She has given up her free time to come and sit with me, take me out to tescos and even today she took me to Shirley for a wander round a few shops.
She is the one who is making me laugh when I’m down, reassures me when I doubt myself and generally makes me smile every day.

I met her 6 yrs a go in the hospital when Lewis and her daughter Phoebe were in having treatment.

She has been a constant, amazing friend who I’d be lost without

Thank you Mel for all you do for me xxxx

SN Mum

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I’ve not posted for a while as not much has really changed the past few weeks.
I’m still in Snowdon Rehabilitation Unit and working hard to get myself ready for home.

Home seems like a long way off due to the fact I can’t lift my leg high enough to be able to manage the stairs. I’ve got to learn to bump up and down  on my bottom. At the moment I can only manage one step before everything hurts.

On top of all my therapy last week I had the added stress of my youngest son being admitted to hospital in an horrendous critical condition. I had to find ways of being at the hospital with him and trying to squeeze some physio sessions in. It didn’t really go to plan. I think I only managed to get in two full sessions. I felt like I was letting people down by not doing anything but my son came first, always will be in that order.

I hated feeling so useless. All I could do was stroke his hair and hold his hand. It was heartbreaking not being able to properly comfort him. I felt so much like an outsider.

Thankfully by Friday,  and with help from numerous consultants, he was discharged from hospital and as a family we were able to go to Naomi House Children’s Hospice for the weekend. It was our first time together properly since 02/01/16.
I was able to do arts and crafts with my eldest, sit and watch the final game of the six nations rugby (and watch England be crowned Grand Slam Winners!) With my husband, sit and help the nurses at night do things like tape changes etc.
We managed to eat home cooked food and relax together.

And then it’s back to reality with a bump!!!

I am now back on Snowdon Ward, on my own and back to feeling useless and a waste of space.
My timetable for the week looks like this:-

Mon – NOTHING
Tues-home visit at 2pm
Wed-psychologist at 11 am
Thurs – Physio 10am & GPM 2pm
Fri –  NOTHING

I have 1 physio session all week, yes that’s right – Just 1 physio session all week.

How am I going to get home if only one physio session all week. I’m not going to prove if I’m not scheduled in for any thing.

I’m getting so cross with myself because I’m going nowhere fast.

Arghhhhhhh

Oh well plenty of people having a worse time than me. I shouldn’t moan, I should be grateful I’m in such a wonderful place.
but why does it hurt so much inside?

I hate being like this, I hate feeling like this yet it keeps overwhelming me and I can’t get away from it.

I hate being separated from my hubby and the boys. I hated coming back here after spending so much time with them this weekend. They are my life and it is them that gets me through each day. Looking at their happy faces on my wall really helps me especially in the morning when I wake up to another day here.

Week 13 here I come to get you!! I may have little to do this week but I’m going to work my socks off to do the best I can despite having just the 1 session of physio.

Night all and and wish a happy Monday for everyone!!!

SN Mum

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Being separated from my family for the past 10 weeks has absolutely wrecked me.

Both boys have been so poorly and I’ve had to sit here and worry.
I’ve been able to discuss things over the phone or via whatsapp but it’s not the same.

Yesterday I was taken to UHS for a doppler scan on my left leg. Everyone was concerned that I had a DVT as my leg was significantly bigger than the right one.

Thankfully I don’t have a DVT but have been put back on my antibiotics to try and help it get better.
Due to my scan I missed a therapy session which I was annoyed about. Today the therapist I was due to see was off sick so no therapy again. I’m due more therapy at 3 tomorrow.
It upsets me that I’ve missed 2 therapy Sessions this week. I need my therapy to get the best results possible.

Tomorrow I have to call Lewis’ class teacher and have his 6mth review over the phone.  I need to flag up a few things that we think need addressing.

At 1pm I have a Goal Planning Meeting which involves me and paul and the professionals involved in my care including my newly appointed social worker.
This meeting will discuss how far I’ve come (not far) and what I need to address to go home.

We are really hoping that we are given the go ahead to go to Naomi House Children’s Hospice on the 18th for a couple of nights. It will be a change of scenery and I’ll be able to go around there safely as it is fully adapted for kids in chairs etc. It will also see how I cope out and about (which scares me shitless)

On a positive note, today my friend Mel came up and we went for lunch in the hospital restaurant.  I tell you now the food they serve is so amazing. All ‘home’ cooked & big portions at a very reasonable price.

We had a great time just chatting. Poor Mel has Bells Palsy and is feeling really low. I know how she feels. They are looking at increasing my antidepressants as my mood is so low.

Speaking to the amazing friendly psychologist yesterday helped me get my head in a bit of a better place.  I think everyone is worried that my concern for the boys and Paul, may have an effect on my recovery

I’ve had my own wheelchair ordered and I’m kind of looking forward to it. Although it does concrete in that I’ll need it for home and out and about.

I guess I’ve got to accept that life is different now.

I’ve learnt as well that I’ve only got a couple of true friends now. So many people have jumped ship and left me alone.

I guess I only need those few friends and my family anyway.

Right time for bed.

Better get my feet sorted out before I go to sleep!

SN Mum

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Today was a single physio session and I was taken to the therapy kitchen.

Once there I had to walk to the worktop with my frame and sit on the perching stool. I was already shattered by this walk but I then proceeded to make a cup of tea for myself and the physio. I’d forgotten how heavy the kettle is and trying to squeeze a teabag was a big of a mission when trying to hold yourself upright.

The worse thing was trying to put a bottle of milk in the fridge. I really can’t twist and lower my upper body and hold my legs straight and still. Everything shakes.

I managed to do some side stepping which is only possible when I can see my feet so no mean feat.

I have been spending time with the young lad who was in an horrific accident last year. His whole life changed as did his families.

He has fought and fought and fought and is a true inspiration to those around him as he has gone from being in a coma to standing talk and walking in 6 months.

When you moan about your leg is aching, you’re tired, aching please remember that there are people out there who are fighting battles to improve their health and lives after events that are no fault of their own.

SN Mum

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