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Bringing up children with a loving husband was always a dream when I was younger. 

Being 1 of 5 children, I dreamt of having a large family, a loving husband and all the love that comes from being a family. 

In 1999 I met Paul when we both both started working at University of Portsmouth Student Union. A work friendship soon turned to something more and in early 2000 we became a couple. I really had met my soul mate. The one person who I could truly be me with, someone who accepted me for all my flaws and who I could enjoy life with. 

In 2004 we were married. I finally had shown all those that mattered just how much he meant to me and I was going to spend the rest of my life with him. 

In 2006 my dream of having a family came true when I gave birth to Adam, albeit 8 weeks earlier than I was supposed to. My world was complete – well almost, the arrival of Lewis in 2008 5 wks early sealed my dream. I had 2 beautiful boys and a wonderful loving, caring husband. I had no idea that from that point on our lives would be rocked in spectacular fashion. Lewis falling ill in late 2008 was a massive shock to us both and we had to really work together for the sake of both our boys. Throughout all that happened I stayed with in hospital and Paul looked after Adam at home. Neither one of us had ever thought that we’d have to split our parental needs in such a way. Being separated from Adam was wrecking me and Paul was finding it hard being away from Lewis but we had no choice. 

For 8 years this is how are parenting lives have worked. It’s been difficult but we’ve had to make it work for the sake of the boys. Lewis’ care/medical needs are so high and take priority over the majority of our daily lives yet we always try and make the best of any day and although at times we scrape through the day with nothing actually being done, the boys are happy and very much loved.

Since January the balance of our parenting has seriously shifted so that it is very much one sided and unfair. 

From the moment I fell ill, Paul has had to step up and take control of the parenting of both boys along with working, managing the day to running of the house and at times worrying about what was happening with me. 

I can hear so many people jm  saying ‘well we do that all the time.’ But this is our life. We work as a team not individuals!

Having to sit and watch as Paul cares for Lewis, plays with him & give meds etc, is so soul destroying. 

I hate not being able to do Lewis’ care but what I hate most is that my inability to care  for Lewis is having a serious affect on Paul. 

He will never say he’s struggling, says he is OK – but I know deep down that he is emotionally finding it hard. I know my health concerns cause him so many worries. What if I’m I’ll and so is Lewis?  What if he needs to be at work and we are poorly. What if either one of us needs hospitalisation? He has the weight of our world on his shoulders and I have no idea how to help him. 

I don’t like how our lives have changed. I hate Transverse Myelitis 

Nobody can miss that the UK has been hit by a rather hot heatwave and that people all over the country are basking in the sunshine and making the most of this glorious week.

I used to love the hot weather. Always made me smile and feel happy. I used to love sitting outside with the kids, watching Adam splash in the paddling pool and Lewis chilling out on the hammock.

I’m not really feeling the love for it this year. Yes it’s nice to feel all warm and bright but the symptoms it’s aggravating are driving me insane.

I’m trying to spend short periods outside so that I can boost my low vitamin D but it comes with consequences.

I really cannot explain the pain deep inside my arms, shoulders and neck. It’s like a fire is roaring it’s way up and down my nerves and muscles. My skin is hypersensitive to touch, so much so that it’s causing me to dread having hugs from my children. How bad does that sound?! I’ve never not wanted hugs from the boys. I love squidging them and showing them I love them. Comforting when they are sad, celebrating when achieved something, but right now I just cant stand it. 

I’ve got constant pins & needles in my fore arms and hands & fingers. My finger tips are still numb and to be honest I’ve really had enough. 

It’s not just the physical side for me that causes my dislike for the hot weather, it’s the affect it has on my 8yr old son and other children just like him. 

Lewis cannot regulate his temperature properly and is unable to have more fluids, as we are all told to have in this heat.

He is spending his days lying in just a pad with 2 fans on him and a variety of flannels & towels soaked in tepid water draped over him to help bring his core temp down.  

We’ve had to arrange for him to have a 3rd IV infusion of Saline this week due to the heat and his losses caused by antibiotics and a L/URTI. He joins myself and Adam with his course of antibiotics as both Adam and I both have chest infections. I can tell you I’m fed up of the sight of meds!! 

This heat is really bothersome to so many people, friends we have have children who’ve had kidney transplants and need to keep a certain amount of fluid of board to keep the kidney happy and healthy. How they manage this I have no idea. I’m in awe of the parents and how they manage to stay on top of it all.

I’m sat trying to work out how I can help my symptoms and stay cool and happy in my wheelchair. Right now it is a beacon for heat as the arm rests, seat pads, back supports etc are all black and roasting me inside out! 

I shouldn’t really moan. There are people out there far worse off who need all our support to remain safe and well in this heat. 

Please can you all check on your elderly neighbours, check they are keeping hydrated and cool. Offer to help them our.  Be kind and considerate and don’t let the heat turn you into a big grizzly bear, over reacting at everything.
Any signing off. I’m toasting and I need a drink.

….. one of those days/weeks/months where nothing you do makes things any better. .

The past few days have been a really hard struggle. My right arm is so much weaker and I keep dropping things. I couldn’t even cut up my dinner today &  had to ask my hubby to help me. 

How bloody hard can it be to cut up a piece of dinner???? I really couldn’t do it. My arms,shoulders, neck, fingers, head all feel like they have been on fire all day with deep stabbing intense pain.  It has really wiped me out. The past 2 days I have struggled to stay awake. I keep nodding off in my wheelchair in the mist bizarre situation – I swear I resemble Noddy – I just keep falling asleep and jolting awake just minutes later. I’ve dropped yogurt and tea because of my random dropping off. I can’t work out why it happens. It’s a horrible horrible feeling which I hate. 

I’ve tried so hard to do sit-to-stands and pedal away on my bike but I just cant achieve what I want to because of the fatigue and pain.

I really can’t explain this fatigue. I just can’t get rid of it and feel like I’ve been bulldozed by a 10 tonne truck and it keeps reversing back over me!! I feel like a completely useless person right now. I’ve been avoiding hugs from anyone as the contact with my arms, shoulders, neck etc is excruciatingly painful. I feel awful avoiding them but when I do need to give a hug I’m trying to grin and bear it. It’s making me cranky which makes me no fun to be around. 
I don’t know how to fix this. Will it just pass or will it get worse? How do I manage this??

You know those evil pens you can get that you leave lying around and wait for some poor sucker to pick it up and press the button only to receive an electric shock? Imagine the feeling of that electrical charge running through your fingers 24/7 and you will be somewhere close to how my fingers and hands feel all day every day. It is driving me insane!
If I straighten my arms I get it running from my neck, down my arms, and intensifying in my fingers and hands.
Lifting anything aggrevates it and I just can’t get it to stop!

My legs are spending g their days having massive spasms and alternating between them. My poor hubby just had to try and untwist me as my left leg was in such a bad spasm!
It was ridiculous! It sends my back into this intense electrical pains, firing left right, up and down.

Imagine trying to function as a human being whilst feeling awful and at times (a lot of times) feeling utterly useless. Some people say it is mind over matter but seriously this isn’t something I can think away.

I’ve had so many people talk to me with such pity in their voice or talk over me, asking whoever is with me how I am. It used to drive me mad when people did it to Lewis but now it angers me. Just because my legs & trunk don’t work it doesn’t mean my brain has given up!! I may get my words muddled but give me a few moments and I’ll get there.

This week, however, has been totally different.
This week we are staying at Naomi House Children’s Hospice  ( http://www.naomihouse.org.uk )
Here Lewis is treated like the child he is, fun loving, mess making, extremely cheeky birthday boy.
He has been spoiled rotten by friends and family who all visited and came to celebrate with us.
We are treated as individuals, none of the attitude of we are just like any other parent. We are treated individually, accepting our worries, fears, happiness and tears.

I’ve had the best week since I fell ill. I’ve been listened to, helped when I needed it and accepted me as me, a lady/mum/carer/wife/friend/sister/daughter.

I’ve been made copious amounts of Tea, been helped across the ever annoying carpet that sends you in random directions, helped carry my meals to the table & helped be a mum (not a carer – I’m not allowed to be any more 😦 )

I’ve been able to watch Lewis play with sensory story items, get covered in paint, splash in water and wriggle on the floor and all without worrying if I am in the way.
I am being treated with dignity and acceptance but at the first sight from carers I am hugged tight while they hold back the tears.

This amazing hospice is one place I really can be me. The place where I can relax and forget all the crap that is my illness and enjoy life the way I should.

It will be back to reality with a bump come Friday.  I’ll have to make my way home with the hubby and the boys and settle back into the usual routine.

Being here really gets me thinking about how life should be. It has reminded me that it can be fun filled and happy and that I can enjoy things even from my chair.
I’m surprised though that my wheelchair hasn’t been decorated in some way seeing as everyone like to get messy!!

Oh well. Time for bed and a sleep before our last day of being ‘just mum & Lewis’
Got to make sure we look our best for Friday.  Lewis has been chosen to pay Naomi House’ rent to the land owners. A dozen red roses on midsummer’s day. Mrs Cornelius -Reid donated the land for Naomi House to be built and all she asked for the rent over the past 20 yrs was a dozen red roses on midsummer’s day and for the hospice to be named after her daughter ‘Naomi! )
So looking smart and summoning every ounce of self confidence, we will meet with all the bosses and Naomi C-R, who now accepts the rent on her late mothers behalf.

Right I really am off to bed. Legs are spasming and I need my meds!

What has happened to the UK? We appear to have this bright yellow thing in the sky and it’s making everyone feel happy!!!

I’m so glad we had my son’s adaptations completed last year. The ramp into the garden has been a blessing to me.

I have been able to get myself out into the garden and spend time with my youngest son Lewis who is on inset day from school.

I’ve been able to watch him push, pull roll play doh, make shapes and have water play whilst being abley assisted by his superb 1-1 Tasha.

I’ve been sat here taking photos of my little man transferring items hand from hand.

His 1-1 has the most amazing relationship with him. They clicked from day 1 and we’d be lost without her. She really gets the best from Lewis and the smiles she gets back from Lewis are magical.
Watching the way they made play doh models and splashed in the water, oh and shot me with a water pistol, has made me smile all day.

Once I’d done my jobs downstairs I was able to sit out and spend quality time with them.

Tasha did me a huge favour today. She was kind enough to put suncream on my feet as I couldn’t reach and also some on my back/shoulders. She is a diamond. I never expect any of Lewis’ Carers to do anything for me but this act of kindness is one of many that not only Tasha but the whole team have shown.
I really needed the lotion on my feet after them reacting to the sun yesterday and as I can’t feel them it meant I wouldn’t know if burned of not.
Such a simple thing but one I didn’t think of when sat in my wheelchair with a dress on and no shoes or socks. 
I really should have worked this out myself but clearly it escaped me. I now have 2 burnt feet and have a feeling I’d be struggling to walk without being in pain.  I really am a muppet!

I really wish I could use my legs, especially in this fine weather. I wish I could do school runs, take Adam to his clubs etc but I can’t. I’ve had to beg and plead with friends to take Adam to school 3 days s week. 

I hate relying on people, especially those who I have little acquaintece with.

It’s such a rubbish situation!

#transversemyelitissucks

Well maybe not lightening speed in reality but in my head they are!

Due to the frustrating lack of feeling in my lower body, I can no longer have a relaxing soak in the bath or stand for hours in a steamy hot shower.I now have to use the facilities that have been provided for my youngest son Lewis.

We were all so excited when Lewis’ wet room was completed. We finally had all that we needed to give him a shower in comfort and be able to move him from room to room in a safe & controlled manner.

Never did we imagine that 6 months later one of us would be reliant on equipment/facilities that had been installed.

Now tucked in the corner of his wet room in an adult shower chair for me to use and a small basket full of my bits that I need to have a shower. Also in the basket are spare pads and wipes as I now have to use the toilet in the wet room as well.

90% of the time the wet room is used for washing syringes, storing nappies/wipes/healthcare bits that Lewis needs. It has his specialist shower stretcher attached to the wall and his ceiling mounted hoist that enables his carers to hoist him on to the shower stretcher with much less hassle than dad lifting him on.

When I need to use the wet room, whether it be for the toilet or for the shower, I stop the care team from being able to access the sink for washing up the syringes, their access through to the kitchen where some of his meds are stored in the fridge, access to his nappies and other personal healthcare items. This isn’t too bad but the worst thing is from my point of view.

The wet room is situated at the end of Lewis’ bedroom and next to the end of the kitchen. I have to lock both doors, the one from Lewis’ room – oh and make sure the blind is down and the door from the kitchen.

Due to my lack of feeling and sensation I have no idea if I need to open my bowels so it can take a long time of me sitting on the toilet hoping that something will happen. I sit there trying to put something noisy on my phone – music/videos/tv programmes – you name it, in order to provide some sort of noise barrier from those in either of the adjoining rooms. I will myself to hurry up, willing my body to comply with my pleads of making something move as quickly as possible. It makes me so anxious and self conscious that people can hear what I am doing and there have been days where my anxieties take over and I dont manage to go and end up having an accident later on in the day.

The same thing happens when I have a shower. I become so aware that I am preventing people from using the wet room for Lewis needs. I do my best to have a quick shower, which isn’t always easy when you can’t reach your feet and have forgotten to put your foot sponge on a stick within reach. I have such fast showers that I am sure I’ve not washed my conditioner out and not scrubbed my back properly!! I find myself feeling vulnerable and at the mercy of those in the house. Should one of them need something for Lewis there is only a coin in the lock in the way of them coming into the wet room and seeing me in all my glory.

It doesn’t help that I am so self conscious and I end up only showering when Lewis is at school and its just Paul or my mum around to help me should I need it.

I feel like my condition has held me to ransom and I hate it.

#transversemyelitissucks #showeringisanightmare

Why does life have to be so blinking awkward? I mean do we need any more added stress than ‘normal’ life throws at us?

I’ve been home now for 7 weeks and its been a trying time. I’ve had to learn to fit in to a very busy family life and try and find my own place in this hectic surrounding.
The constant buzz of Lewis’ equipment and the coming and going of his carers leaves little quiet time for me to recharge myself to an acceptable level. It isn’t anyones fault that its like this, its just life.

My mum has been down since before I came home and over a 3 day period she helps me withe the housework, helps prepare meals and has been the most amazing companion during the day. She has worked hard to make my life as easy as possible (some days I get the feeling that she wishes she hadn’t  as I do like to make things difficult for myself!)
I have become a rather good sparring partner for the door frames although they win every meeting quite easily so I really ought to give up that fight! I think the bruises on my knuckles would appreciate a bit of healing time!

When I came home I was fortunate enough to be given access to the Snowdon @ Home team and for 2 1/2 weeks I was given daily physio & OT to get me started on the exercises I needed to help me reach my biggest goal. I really want to be able walk around the ground floor of our house with my frame and no other support. I wasn’t unrealistic in saying that I want to be able to be running about and doing all things I used to as I know that that won’t happen.

I am now under the Neurological Rehab Physio Team and had my assessment on Tuesday.
My physio said that to reach my goal I need to work on the strength in my arms, controlling my legs using sight and hopefully I’ll be able to achieve it.

One thing I have learned since being home is that I am useless at controlling/managing my fatigue. I always seem to over cook myself and end up suffering for days and days after. It really triggers the pain in my pack and my arms feel like they have become disconnected from my body, they are dead weights and have really painful pins and needles & my skin feels like it is on fire.

I am a stubborn person and I don’t always listen to advice I have been given. Its paying me back though now as every time I think I can do something that some one has advised I shouldn’t do, I end up in a pickle, normally dropping things or being left in pain.

I really do need to start to listen to the advice, especially the advice my mum gives me. For years she has suffered with Fibromyalgia and it leaves her in such pain when over doing it.
She rightly tells me off when I over do it and dont listen to her, but I’m so stubborn at times I still keep going.

I know that by doing this I will never manage my fatigue properly. I need to accept that I have changed and I just cant do what i used to!

Acceptance of any change in circumstances, abilities, change is so difficult to grasp at any time but when it is acceptance of a life changing episode it is so difficult to openly grasp and face head on.

I wish I didnt have to accept my life has changed, accept that my husband now has 3 dependants not 2, accept that I need my parents help and help from friends. Without all the peeople in my life I don’t think I’d stand a chance of biting the bullet and grabbing accceptance by the horns and letting it crash into my life.

Acceptance must come at some point – maybe right now I’m just not ready to take that step.

I’ve been home for 2 weeks now and I’m loving being with my family.

I’ve got to learn how to manage my fatigue and what I do each day so that I can remain on top of it.

I’ve been pretty emotional these past few days and I don’t know if it’s because I’m tired or whether I have just become more emotional in general. I’m guessing it is a mixture of the two.

I cried when Lewis put his lip balm to his lips, I cried when Lewis put a toothbrush into his mouth when it was time to clean his teeth, I cried because my leg back separated from my catheter without me knowing & soaked my trousers (that happened 3 times in 20 mins)
I cried because I’m tired and can’t sleep, I cried when I received a medal and a vest number from Elizabeth in Santa Fe.

I’ve had numerous bladder accidents that have left me feeling out of control and pretty useless and pretty pathetic if I’m honest.
It is mortifying having to ask your husband for new underwear, trousers etc. I don’t think I’ve ever felt so embarrassed.

How on earth my hubby stays so strong in this crappy situation I don’t know but he must be super human. He’s looking after 3 of us, working,doing after school activities with Adam, sorting care team etc etc

He hasn’t dropped one ball yet but I’m waiting for it to happen.
I think the fact he has my mum’s support 4 days a week really helps.

Saying that my mum is an angel in disguise. She has stayed with us for 4 days a week since February/March. She does everything housework wise and gets all the little jobs done despite her own physical limitations. She has had me crying on her, Adam stropping on her, Lewis pooing for her and yet she just gets on.

She’s teaching me ways how to manage the chores but to still conserve my energy stores.

She really is a rock to us all.

Since staying with us she has learnt to give Lewis his meds, suction him and change his pad. Her confidence with him has grown significantly.

I’ve now finished my 2 week course of physio at home by Snowdon @ Home. I’ve been referred to the rehab gym to carry on my physio but that could be a month or two from now so we’ll have to see what happens. 

I just need to focus on my standing and my walking with my frame so that I can be less dependant on Paul.

Right off to try and sleep again seeing as it’s 00:51 now!!!

I know I’m probably doing this all out if sync  but here us some info from the Transverse Myelitis Association

TM can be the presenting feature of Multiple Sclerosis. In individu
als with acute partial transverse myelitis and normal brain MRI, about 10-33 percent develop MS over a five to ten-year period. If the brain MRI shows lesions, the transition rate to clinically definite MS is known to be quite high, in the range of 80 to 90 percent within a few years. Those who are ultimately diagnosed with MS are more likely to have asymmetric clinical findings, predominant sensory symptoms with relative sparing of motor systems, MR lesions extending over fewer than 2 spinal segments, abnormal brain MRI, and oligoclonal bands in the CSF.

Although typically a monophasic disease, in a subset of cases that manifest a history of systemic autoimmune disease, TM can be recurrent. Recurrence can often be predicted at the initial acute onset based on multifocal lesions in the spinal cord, lesions in the brain, presence of anti-Rho antibody, underlying mixed connective tissue disease, the presence of oligoclonal bands in the cerebrospinal fluid, and/or NMO-IgG antibodies.

On Thursday I went to see my neurologist with hopes of getting some answers and a plan for moving forward.
As you can tell by the title, we didn’t get any answers.
Until I have another relapse they will not diagnose MS. I can’t work out how I’ll know I’m having a relapse but there you go.

I’ve been home a week now and it’s been a big change for the whole family, not just us but my parents as well.
My mum has given up her free time for months and is now staying on a few weeks longer to help me get settled in.

It’s a very different experience from what I remember. It’s noisy, hectic, funny and frustrating all at the same time.
There are people coming in to help me (Snowdon @ Home), visits from Community Nursing teams (Lewis and myself), Lewis’ care team and of course Paul Adam Lewis My Mum and me.

It’s so nice to be home, back with my boys but it’s opened my eyes up to my limitations. I can no longer do school runs (some may even call me lucky on that front!), cannot care for Lewis – cannot change pads, draw up meds, comfort him lime I used to. Only way I can have a cuddle now is if someone hoists him on to my lap.

I’m constantly in the way in my chair and forever have people stepping over me or pushing me out the way.
I don’t mind so much as long as they say excuse me or ‘do you mind if I step over you’. Mum and Paul will just push me out the way which is fine, I don’t mind them doing it now I’m used to it. They need to do it to get to lewis or carry out a task that’s important.

I still feel like an alien looking in from space. My body is just useless and it’s driving me mad. I feel awful that my husband has to empty my night bags every day and deal with the not so nice side of some things. I’ve had numerous accidents since been home where I’ve miss timed my bathroom trips.
I’ve taken notches out of the door frames, I’ve spilled food all over the floor, I’ve dropped things for no reason at all and it all sucks.

We’ve kindly been given the money to pay for our front door to be lowered so that I can get out safely and get Lewis out easier.  A charity call ‘Southampton Doing It For The Kids ‘ have been supporting Lewis for the past 13 months and are continuing to support him this year. They’ve hoped make things for Lewis so much easier which in turn has made things easier for me.

I guess it’s going to take time to adjust to this new life but I’m still so angry that #Transversemyelitis has had such an affect on us all.

Oh well

#trandversrmyelitiswontwin
#bestfamilyintheworld
#transversemyelitissucks