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Right now that is the only way to describe how I feel.
Both my boys are poorly at home and all I want to do is be there to comfort them, hug them and make everything better.

I can’t do any of that and it’s horrible. 

This illness has taken so much away from me.
My ability to Walk
My ability to care for my youngest son
My ability to comfort and hug them
My ability to hold a pen/cutlery properly
My ability to dress properly
My ability to go to the bathroom.

It’s taken a big chunk of who I am away and I hate it!!

I had a physio session this afternoon and asked whether it is normal for someone like me to be more affected on one side than the other and she confirmed it’s a common thing. My right side struggles with everything and as I’m right hand dominant it is really frustrating.

I hate how this illness is leaving me feeling so rubbish.

SN Mum

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As you can tell by the post title, it’s been a day of crying here.

I didn’t sleep well last night worrying about my catheter coming out so was tired and emotional when I got up.

I just fell apart on the doctor and the HCA when the doctor came to talk to me about taking it out. I just can’t get my head around the fact I will wet myself. I feel so out of control as it as and this just fuelled my stress to a new level and the tears just fell.

I’ve been struggling with the fact that I am still so far away from home and I just want to be with my family. I feel like a stranger to my children, so much so that it’s destroyed me when Lewis hasn’t wanted me.
I know I need to do the stairs safely and confidently but right now that just seems so far off.

I really struggle to get my feet on and off the box without help and it frustrates me so much.

Today just wasn’t going to plan. I can’t see the supposed progress I’ve made and feel like no matter how much I throw myself into my therapy that I am getting no where. Feel like I’m trying to walk up the down escalator.

Also chatted to the doctor about whether there was any news on my test results for a possible MS diagnosis.
She said it is looking highly likely from the results they have but they need another bloody test doing and my neurologist will see me in April to discuss it all.

I said to her that I know that TM only causes lesions on the spinal cord and nowhere else which would mean that the lesions seen on my brain have been caused by MS.

It’s another thing that is playing on my mind and until I can get that and my other problems straight in my head I’m not going to make any progress. 

I guess I need to talk to the psycologist again. I need to find a way to manage all these feelings and self doubts.

I feel like such a burden on everyone.

My friend Mel popped in with some bits she grabbed me and gave me a huge hug. She has been a huge support through all of this like my other friend Lisa.
They’re support and understanding has meant so much to me. I can cry on them, laugh with them and be myself. They give me the lift I have needed and they don’t judge me.

My husband Paul has been an absolute rock. The stress this has put on him is phenomenal yet he keeps going. He is keeping the kids safe and happy, he is working in between visits here and doing school runs etc. He has listened to me cry and seen me fall apart yet he has stood by me.
He is my world.

SN Mum

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Today has been a mixed day for me.
I didn’t sleep brilliantly last night as my lower back was agony so I was tired first thing.

Had physio at 10 and it was a tough session.

I started off with a bit of walking with my frame. I’m really struggling with my right leg as my toes won’t stop curling under. I can’t get my feet to do anything if u cannot see them and trying to walk with a frame and look where I’m going is so tough.
I then attempted some side stepping against the work top. I really struggle with this as I have to try and support myself on flat hands. I ended up leaning on my fore arms to allow some weight to come off of my feet. I managed 2 steps each way.

Then the physio asked if I’d done any free standing (not holding on to anything) and I said no.
I gave it a damp good go though.

I really had to believe in myself and my legs. It was so hard trying to relax my shoulders and lock my legs in a straight position. I must have looked ridiculous. My legs were shaking like mad and I was swaying alk over the place before I’d even taken my hands off the work top.
I managed to take my right hand off and place it by my side and slowly lifted my left hand up.

I was standing on my own for the first time!! My legs and body were shaking like crazy and I kept saying like a weeble bug I managed it for a whole 50 seconds!!! Yep me, who has no feeling in my trunk and legs, managed to stand on my own (with the physio just using her fingers to steady me.

After all of that I then did a long walk of about 8 m. I am trying a new technique of slowing my breathing and trying to relax everything so that my toes can move with less effort. It was exhausting. I tried so hard I was in agony but I did it.

Once I’d finished I went back to my room and dosed up on pain killers and watched TV.

It was while I was watching TV that an advert for Always came on and we’re talking about weak bladders. I then remembered that tomorrow they are taking out my catheter and trying to see what happens.
I ended up all panicky and stressed. I really cannot handle the humiliation of wetting myself and someone having to clean mw up. I sometimes think that doctors etc forget that we are going through hell and back emotionally to get ourselves as well as possible. I think they forget to put themselves in our shoes and see how we feel.

Add into that the doctor starting me on antibiotics as they think that the rashes on my legs aren’t an allergic reaction but possibly cellulitis. My legs look awful, in places they look burned.
I really hope it won’t leave any more scars on my legs. Got enough from my leg surgeries years ago.

Really missing the boys terribly today as well. Just wish I could snuggle up with them. Yesterday Lewis didn’t want me to help him and kept looking to daddy when wanted his programme changing. It made me feel so very useless.

This evening I’ve been talking to a young patient whose girlfriend has said she needs space and time out. Poor lad is devastated. He’s come so far with his rehabilitation and can’t see how to move forward. Reminds me of being a teenager again.

Also spent a lot of time with one of the elderly ladies trying to get her to take her meds. It’s no mean feat when you are faced with a strong willed person who is confused at times.

This place really is amazing.  Everyone looks out for each other and helps each other out.
We’re all here to get well and that comes with support from those in a similar predicament.

Oh well off to watch TV and try and forget about tomorrow

TTFN

SN Mum

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Transverse myelitis is very rarely heard of and not much is known about it.

I read a post today by Lussy who outlined some very interesting facts that I thought I’d share with you all.

I’m currently doing research into TM and what can be done for me and others the same as me.

Have a read and see what myself and other suffers are dealing with every day

1.Four classic features of transverse myelitis emerge: (1) weakness of the legs and arms, (2) pain, (3) sensory alteration, and (4) bowel and bladder dysfunction.

2. Pain is the primary presenting symptom of transverse myelitis in approximately one-third to one-half of all patients. The pain may be localized in the lower back or may consist of sharp, shooting sensations that radiate down the legs or arms or around the torso.

3. Patients who experience sensory disturbances often use terms such as numbness, tingling, coldness, or burning to describe their symptoms.

4. Up to 80 percent of those with transverse myelitis report areas of heightened sensitivity to touch, such that clothing or a light touch with a finger causes significant discomfort or pain (a condition called allodynia).

5.Many also experience heightened sensitivity to changes in temperature or to extreme heat or cold.

6.Bladder and bowel problems may involve increased frequency of the urge to urinate or have bowel movements, incontinence, difficulty voiding, the sensation of incomplete evacuation, and constipation.

7. Body temperature of those with TM is typically lower than a normal person.

8. Most people with TM have poor circulation even if paralysis is limited.

9.It is often difficult to distinguish between a patient with an idiopathic form of transverse myelitis and one who has an underlying condition, therefore the diagnosis is often delayed, sometimes for months or years.

10.Depression is extremely prevalent in patients with TM.

SN Mum

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I think this week has been the hardest week I’ve had since my diagnosis. Not just physically but mentally too.
Not only did I have to accept that I can no longer care for my children in the way I did before but I had begun to realise that my biggest goal of doing stairs so I can go home was further away than I had hoped.

Top that off with being told the doctors want to see what happens if they take my catheter out and hey presto I was a sobbing mess.

It is so hard facing up to the fact my life has changed so much in the past 2 months. I can’t do so many things that I had done with ease at the end of 2015.

I never imagined that I would end up with a catheter as I can’t feel my bladder. Since its been in and on a flip flow I’ve had 3 big accidents whereby my bladder has bypassed the catheter and I’ve wet myself.
So imagine my horror when the doctors told me that next week they want me to see what happens if they take it out. I know what the outcome will be and I really don’t want the humiliation as I wet myself again.
They fully understood my concerns but they need to know if my bladder will retain any fluid so then to discover whether I can train it to release in a routine. If it retains and doesn’t let go I’ll have to be trained to self catheterise.
If I wet myself then they need to look at possibly another type of catheter.

To be perfectly honest it all terrifies me and I don’t know what to think or feel.

My emotions are totally shot to pieces.
I’m desperately missing my boys and hubby and knowing my role with them has changed has really upset me. 
The tipping point came on Tuesday.
Lewis was lying on my bed and I was playing with his hands and tickling him whilst I was sat in my wheelchair.
He had a typical Lewis moment and started to Reflux and be sick. In that split second I realised just what I cannot do now. I wasn’t able to calm him, suction him – I couldn’t do anything to help him.

I felt sick knowing that my role has changed so much.

I hate it!

SN Mum

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How hard can it be to learn to walk??? I mean I’ve been walking since I was 1yr old so surely you’d think it would be easy?? Well that’s what I thought and how wrong was I!!!

It’s not just a case of putting one foot in front of the other like I thought.

It seems that lacking communication from my brain, to tell my legs that they exist,is causing huge problems. I still have no feeling or sensation from my bra line down and it’s really bugging me now!

A stupid lesion at T1 has and continues to cause me no end of problems.

I’m trying to learn to stand and walk using sight but it’s not going quiet so swimmingly.  Trying to tell my legs to lock straight so I don’t collapse when standing is incredibly hard and I shake like a jelly on drugs!!
Trying to take steps in a row requires my brain to tell one leg to lock while trying to tell the other one to raise knee, push through hip, kick out, lift toes and push heel down all in a split second. It’s not easy at all.

Everything shakes, my hands go white,  my shoulders hurt and my elbows squeal in pain where they are taking the strain through them holding onto the frame. Add in self doubt and not trusting and believing in your own body and you’ve got a very tiring, difficult time ahead.

I’ve managed to strain the muscle and tendons that run from my wrist to my elbow along my radius.

At the moment I feel like I’m not winning.  It’s so hard trying to do all this and it not going how I want it to.
I just want to be at home.

I’m not expecting miracles but surely something should be happening by now, some improvement and progress on the bigger plan of going home.

I’ve got to learn that it really is baby steps and that yes it will take a long time to build confidence and to learn to trust my body and it’s capabilities and limits. I can only do what it let’s me.

The fact I have hugely swollen feet and ankles, as well as severe pain in my hand and elbow means I need to take a step down. I need to take a step back (sorry bad joke!) and let my body take the lead, well I can’t completely as I’m under the control and guidance of the lovely physiotherapists and their rehabilitation assistant.
I had core group with the RA today and it was a full on work out.
Have you ever done a pelvic tilt? Until last week I had never done one. You have to imagine that you need a wee and you pull your stomach muscles inwards to stop it coming. Then rock your hips towards your back and flatten your back out. Its so hard to describe but its so weird try and do when you have no feeling. Also had to do knee drop outs and knee rolls side to side. I really wish I had some feeling so I could at least get feedback from my body to my brain to know if I’m doing it right and making progress.

I’ve just realised I’m waffling on.

I’m going to go and eat some biscuits, get some oramorph and attempt to go to sleep with my legs raised high and a catheter that won’t empty properly!

SN Mum

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As the title says, it’s been an emotional week this week.

My eldest son Adam turned 10 yesterday and it was an emotional day for all. In the past 5 years I’ve only celebrated his birthday at home once or twice. Lewis has been in hospital and now I am in hospital.
He has had to deal with so much disruption in his short life and has faced it with a brave face and barely moaned.

I decorated my room with balloons and banners with a lot of help from my friend and her eldest daughter.

We tried to make it as special as.we could.

When he arrived in the morning he was so excited. We gave him his present and i filmed his reaction. To say he was seriously overwhelmed is an understatement! He ran to me, burst into tears and kept saying ‘I love it, I love you, I’m crying’

He has never been a child that is ungrateful or expects more from you. He was so surprised that we had bought him something so wonderful. He just couldn’t believe it. To top it off we have him a game to go with it and that was one happy 10yr old!!

It’s really drained me emotionally. I’ve reflected back on when he was born prematurely at 32wks. He has grown up to be such a caring, loving,  thought young man who thinks nothing of looking after those who need comfort or help.

He pushed me in my wheelchair all the way to tescos the other day just so we could all go for a Costa together as a family.

I really want to, need to get home now. I need to be with my family.  I want to be able to curl up with them and do normal things.

I’m working hard on my physio. Over did it tuesday. Walked with a frame my furthest distance yet! I’ve never shaken so much through effort.

Today I did (attempted) small steps along a work top and did some balancing standing up. I’ve realised I don’t trust my legs. All because I can’t feel them. I feel like I’m going to fall and face plant the nearest surface.

I’ve developed a strain in my wrists and elbows due to taking so much pressure through them. It’s so painful. Got to try and rest them.
Add into the fact I have to try and keep my legs up due to serious cankles I’m doing well!!! My toes are vanishing due to my swollen feet!!!

Oh well tomorrow is another day. Core group in the morning then I’m done for the day!

No visitors though tomorrow so will be a long and quiet day.

Time for some pain meds and to put my cankles on their pillows and watch rubbish on the TV

Xx

#Transversemyelitis #iwanttogohome
#iwontletTMwin

SN Mum

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The last few days have been pretty busy. Thursday Friday and Saturday were days for therapy.

Core group was interesting! Trying to do certain core exercises when you cant feel anything is hard work and left me feeling disappointed to be honest. I don’t know whether or not I’ve managed to do what was asked of me so felt a little bummed about it.
Then was my Goal Planning Meeting – setting my small goals that will lead to my bigger goal of going home.  I certainly won’t be going home likening was before this happened.  I’ve accepted that now.

Saturday was interesting, rewarding and bloody hard work.

I had physio with a lovely lady who took me into the therapy kitchen.
After transferring to a perching stool using my frame, I had to pull/push my way to standing relying on just my non existent legs and 2 wobbly arms

I did it! It took every once of energy to get there but I did it!!!

I then made myself a cup of tea, sitting on the stool in between and leaning heavily on my left arm when stood up.
Trying to teach my legs to lock straight and my bum to stay in and my body to stand tall is no mean feat! Every part of my body shook as I did it.

I then managed 3 x 1 min stands using just my hands for support. I think my hands went white for all the weight I was pushing through them!! 6 weeks ago I didn’t think this would be possible! Still 1 min is better than 0 min!
All this hard work was then paid off by a leg rub with moisturiser and rubbing with a towel, nope still no feeling!

After lunch came my best reward!
Cuddles with my boys! When I transferred from my chair to bed with my frame my eldest said ‘mum I’m so proud of you, that looked so hard but you did it!’

I spent a good hour having a cuddle with them before I became too tired to support Lewis.

Today (sunday)

I had a bit of a lay in, git myself washed and dressed, using my grabby stick I managed to get my trousers on!!!

Then Paul and the boys turned up, followed by my mum & dad.
We all went and had a very lovely meal in the restaurant together. A lovely way to spend Valentine’s day.

My mum then gave Lewis a much needed hair cut and then they left.

Paul then took a look at my feet and ankles. They currently resemble fat sausages so gave them a massage and elevated them for me.

Now I’m on my own again, thinking of what to do this evening and what the week ahead brings. Hopefully some improvement.

SN Mum

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How many times in the last 37 years have I said
‘I’m just going for a walk’
‘I’m going to get dressed’
‘I’m going to make a cup of tea’ & so much more.

I didn’t realise until I fell ill, just how much I took things for granted.

Even the most menial tasks I took for granted. 

I wish I had appreciated that I was lucky to be able to do all those things without assistance. I mean I have always thought I’m lucky when I’m looking after Lewis and see all his struggles and dependency on us to care for him.

I guess I never thought it would happen to me. I mean who expects that one day they are fine one minute and the next no feeling?

SN Mum

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I’ve been at Snowdon now for approx 1.5 weeks and it’s been so very tough,physically,mentally, emotionally.

We have a big time table on the white boards in our rooms. This details who we are seeing, what speciality and the time & day.

It’s handy to look at a glance what I’m doing but also fills me with anxieties and fear when I see I’ve got physio.

My biggest fear at the moment is letting down all the staff who are dedicated to get the best from me.
I scared of letting down Paul and the boys by not progressing quickly enough.
Deep down I know that I’m not failing anyone and that I just have to take it ‘step by step’ day by day but I just want to go home.

I had mobility today with a physio and therapy assistant in the big gym. Paul came to watch a bit. I was so desperate to show him that I’m making progress even though it’s a tiny flicker. I so didn’t want to let him down.

I started off on the parallel bars. With great effort I managed to walk up and back down. I have a huge problem whereby my brain isn’t passing messages through to my legs and I can’t lift my toes up properly so they drag when I’m walking.

I then walked back up the bars again.
The therapy assistant decided to make me walk backwards. I’ve never done this before and scared me so much.
It was really hard work and my toes again wouldn’t lift. Paul laughed and said I looked like I was doing the moonwalk!!

I spent a fair while sat in my chair while they found a piece of equipment that would help lift my toes.
My right foot is much worth than my left. It just doesn’t seem to want to do as I want.
Well after a lot of faffing around trying to work out how to do it we got this piece of equipment to work.

I have a strap that goes diagonally across my chest which is attached to a strap round my waist. A bungee cord is attached to the waist strap and attaches to a strap the is wrapped round my right foot.

Well I looked a sight but I’ll try anything to get my legs to do something vaguely normal!!!
They got me to walk up the bars again and to my surprise my toes cleared the floor as I took a step! Found it hard having my trainers on on my left foot. Found it dragged more so put my slipper sock back on. So trainer on right foot with this contraption, slipper sock on left foot and we made our way back to the ward in my chair ready to do some walking.

Well I surprised myself. I walked 10m with my frame across the ward! I only stopped once but I made it! Right foot clearing the floor and left foot doing its little drag!

I am so chuffed with myself. My arms hurt like crazy, I’m super tired and my back is killing me. Nothing a dose of oramorph won’t find , along with a nap before tea!

I’m desperate to improve in all areas but yet again this morning I had to get a nurse to help put my trousers on as couldn’t get them over my feet. I’m no longer as flexible as I used to be. That’ll be the extreme weight gain causing that! 2.5st in 5 wks!!!!! It’s insane.

How on earth do I lose this when I’m not mobile.

Oh well 1 achievement down – rather a lot to go. I have to keep myself grounded as if I push to far I’ll end up poorly in hospital again.

I’ve got my Goal Planning Meeting tomorrow.
All the team around me – physio, OT, consultant, key worker, new social worker will all have a meeting with me. This is to discuss my goals, how they think I am doing and discuss my hopes about my treatment.

I’m missing the boys terribly and just want to snuggle up with them. This weather is perfect snuggle weather

I did manage to break out of the ward today though when my friend Mel came in and took me to tescos in my chair.
She has been my shining star the last 2 weeks. She’s been shopping for me, kept me company and not changed her attitude towards me.

I managed to buy Adams birthday cake, his cards, some balloons, banners, candles and wrapping paper. Paul brought up his present so I can wrap it and have it hidden ti he comes up on wed

Hate that I am not at home for his birthday. They are coming here but it’s not the same.

Oh well. I’m now going to go and look at all the pictures of Lewis that his carers are sending me. Scrummy boy!

TTFN x

SN Mum

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