Blog

Thursday 28th April hopefully brings an answer to something that has been over hanging us since the beginning of January.

When I had my contrast MRI done, they scanned my brain as well.
(Yes they found one before you make a comment!!)

My brain scan showed that I had lesions on my brain. These were inactive lesions that signified that there was an underlying problem.

I’ve had a lumbar puncture and numerous blood tests (some of which were sent to Oxford.)
These tests when analysed may very well, almost likely lead to my Consultant Neurologist telling us that I have Multiple Sclerosis  (MS)

We have had of plenty time to think long and hard about this. Whether it is MS or not we do know that I have some form of neurological disorder. 

We are know this result won’t affect how we face life etc.

I am already in a wheelchair and have significant changes to my life so we will just tackle it all head on and work towards keeping our family happy and strong. 

If I have MS then we will do our research, ask questions and just keep plodding forwards.

The title says it all.

The H word has been discussed and will be happening on the 25th of April. 16 weeks after being admitted to hospital I will be an outpatient not an inpatient.

It’s not been an easy 16 weeks that’s for sure but with determination, frustrations, laughter and tears I am at the end of this stage of the journey and at the start of my next.

I have to face up to a lot of changes in my life, from no longer being able to care for Lewis to being dependant on a wheelchair to mobilise myself.
I’ve got to look at life from a whole new level. Now I wasn’t tall before I became ill but now I’m just that little bit shorter!!!

Being here in Snowdon Rehabilitation Unit has really given am insight into the hard work that is put in to getting those affected by traumatic brain injuries, strokes & various other neurological conditions, back into their homes and living some kind of ‘normal’ life.

The staff here are beyond excellent. The level of care they give is second to none and the key to helping those admitted getting back to some sort of normality. They don’t just care for the patients, they take the time to get to know the families and work with them to achieve the highest level of care possible.
I’ve had days when all I’ve done is cry. Trying to reach my targets and pushing myself through every possible emotion and feeling like I’ve failed has left me so drained. The staff have come in and picked me up, made me smile again and reminded me that to reach any goal I need to break it down and not pressurise myself into going full tilt and leaving myself so drained I can’t manage anything the next day.
They’ve made me laugh and taught me that anything is possible with the right support in place.

Each and every member of staff on the ward, from housekeepers, Healthcare Assistants, nurses, physiotherapists, occupational therapists, Rehabilitation Assistants and doctors have contributed to my rehabilitation and encouraged me to achieve the best I can. It is down to their care, attention, encouragement and laughter that I am the stage that I am ready to go home and tackle all the next challenges head on.
I never believed,dreamt that after being told I have TM that I would be in the position I am in now.

I’m so lucky I can now sit up unsupported and am able to mobilise myself in a wheelchair, as well as walk a few metres with a walking frame.

There are things I can’t do due to the lack of feeling and sensation from the top of my trunk down and that may or may not return. For now I will fight on and face any new challenges that come my way.

I absolutely cannot wait for Monday to arrive.
I cannot wait to be home with my 2 boys. To kiss them goodnight and snuggle them down.  I cannot wait to be able to watch them sleep, dreaming happy dreams and to hold them tight when they need a hug.

To be able to sit and chat to my husband face to face without having to whatsapp him.

To have a proper cup of tea (no more rubbish teabags), to help make dinner and finally be a family again.
I’m not denying that adjusting to home life will be hard. Of course it will be after so long but it’s home and it’s where I belong.

Just 2 more sleeps as Adam would say and I’ll be home, HOME!!!

Ps No telling Adam!!! I cannot wait to see his face when he gets home from school and sees me there for good!!!!!

Well the scan for DVT was no.

One weight off of my mind as I start this weekend.
The doppler showed no evidence of clots and confirmed that there is an infection in my legs, as we already knew.

My legs are bright red and glowing and if I could feel them I have
a feeling I would be ready to chop my legs off.

It took 3 weeks for the last lot of antibiotics to kick in.

I spent the night with dry wipes soaked in cold water wrapped around my legs.

This morning things escalated and the itching became intense. My arms are raw from scratching and all I want to do is rip my arms off. Every part of my body that I can feel is itching badly. I’m covered in lanacane cream but it’s doing nothing.
we’ve worked out that I appear to have developed an allergy to Flucloxacillin, the antibiotics I am on for my cellulitis.

It is soooo frustrating!!!

Do you often stop to think about the what ifs in your life?

I know everyone has those moments where you wonder about how life could have been so different if you’d have done this or that.

I’ve been sat here today between sessions and meal times thinking about how my life has changed since January and if there was anything in the time preceding my hospital admission that would make life any different.

I’m pretty sure nothing I did in the lead up to Jan 2nd would have made the slightest difference but it doesn’t stop you wondering.

I did this kind of thinking when Lewis was first diagnosed with health problems. All the what if I’d have done x y and z then things would be so very different. I know it’s not true and that nothing I did would change this course in our journey. 

Today has been a hard day emotionally. I had a tough physio session yesterday where I had to try and get off of the floor under my own power in case I fall at home and noone is with me.

In an hour long session I managed to turn my self 160° on the floor and failed at getting myself into my chair without the help of the physios. This challenge I had known all along was set up for failure so, in all honesty, I knew it would be one I wouldn’t succeed at.

That session in itself was absolutely shattering and my arms burned for hours afterwards, in fact when I woke up they were still burning.

This morning was exercise group. I really wanted to try and do some controlled work in the bars so the RAs set me up and assisted me in a variety of activities.

The first was walking from one end to the other holding onto the bars.  Well apparently I would put the world twerking champion to shame!!! My leg spasms cause my whole body to shake and it makes moving my right leg extremely difficult. It really caused me issues getting from one end to the other. It is physically draining and so effort full.
I then did side stepping to the right and I was getting so frustrated with my right leg. I did it which was a miracle in itself.
I then did side stepping to the left and it was a little easier and a bit less effort full.

After a 10 min sit down to try and recover I then walked back to the other end using the bars and a lot of muttering under my breath. I pushed so hard on the bars for all the activities that my knuckles were white!

I then had my hardest task. One I so desperately want to achieve at as it will open up so many opportunities at home to do activities with Paul and Adam.

Standing up, looking down the bars & in front of an RA sat on a stool I slowly let go with my right hand. I had to try and hold my balance whilst just holding on to the bar with my left hand.

I wobbled so much from side to side and backwards and forwards. My leg was spasming and twitching and jumping around and I have a reasonably big issue in that because I have no feeling from trunk down, I cannot find my centre of gravity.

I look like a human weeble. It’s so hard.

I tried with just holding on with my right hand and the same thing happened again. The RA had to keep moving my legs and hips to better positions to try and control not only the balance issues but also the stupid jumpy legs needed controlling.

By the end of the session I’d managed 2 x 40sec stands and was exhausted. 

I think exhaustion may have had a leading role in what happened tonight.  Yet again in totally humiliating fashion I had a fall in the bathroom.
All the staff were on their break and I didn’t want to disturb them so I took myself off to the bathroom and attempted to go to the loo. All fine you may think, well I thought so. That was until I went to get back in my wheelchair. Just as I was lowering myself into my chair it slid and I ended up in a heap on the floor. I’m not 100% sure what happened but after pressing buzzer for a hand up, I ended up with the emergency buttons being pressed and all the staff ended up in the bathroom trying to work out how the hell to get me up.

It was decided the hoist was the best option for helping me up so up I went.

I was taken back to my room in the hoist and had the nurses check my body for any damage.
I’ve got a graze down my left side, not a huge one but it’s there all the same.

After a lot of tears and 2 cups of tea I’m feeling ok but humiliated, angry, frustrated and mortified that a this has happened.

The only really good thing that has happened today is that I have started to get to know a lovely lady called Elizabeth, who lives in New Mexico. She has been paired with me through the website http://www.whoirun4.com

It is an amazing site which matches runners to those who are unable to run themselves due to illness or trauma. Lewis has had a runner (Jasmine) for the past 4/5 years, Adam has a runner (Amy) who has run for him in the past 2 years.
Now is my turn and I’ve landed on my wheels.
What a truly lovely thing she is doing by using her legs to make miles for me while I cheer her on from my chair. 

I highly advise that anyone who has some form if disability, no matter how do you are, or how severe things are, join Who I Run 4 and get a fantastic buddy just like me!!!

Right time for buzzing and getting a hand into bed.

Night all.

Apparently tomorrow is a new day!!!!

TTFN – As the bouncy orange one would say xxx

Now everyone always say they have the most amazing family ever but I’d like to say they are all wrong!

I have the most amazing family!

I can hand on heart say that my family are the most caring, devoted, loving family anyone could ever dream of having.

Let’s start at home.

I have 2 absolutely beautiful loving children. They are both amazing individuals who have such brilliant characters and dote on each other.

Lewis may have so many health problems but that doesn’t stop him smiling and laughing day in day out. He is an inspiration to so many.

Then there is Adam. My most wonderful 10 year old. He has faced so much in his life so far yet remains a caring, loving child with such a positive outlook on life.
He could teach many adults a thing or two about being accepting and loving to all around them. He has such an open mind, inquisitive and extremely knowledgeable. He is perfect.

Now my one in a million husband Paul. Words cannot express how much I love him and how much he means to me. He is the glue that holds our family together. 
Since January he has held our family together, being mum and dad to the boys, managing care staff for Lewis, doing school runs and after school activities, trying to carry out tasks to make our home more accessible for me, bringing the boys to see me weekly and on top of all this trying to work & hold down his job!

He has been strong for me when I have been upset and worried about my diagnosis, reassuring me, hold my hand and wiping away my tears.

He has researched my condition, spoken to health professionals to get information and has listened when I’ve been scared.

He has continued to decorate the kitchen, held meetings about Lewis and tried to single handedly look after both boys when there have been no carers in for Lewis.

He has hidden away his feelings as he has tried to remain strong for our whole family and and listened to everyone’s fears and struggles.

I have been an absolute bitch to him at times. I’ve lashed out when angry about how I am feeling and when frustrated that my progress isn’t going the way I had hoped. He’s listened to me moan when he can’t bring the boys up due to things he needs to do at home and has had me crying down the phone in distress and frustration as I can’t do something. None of this is his fault and I am truly sorry for the way I have treated him. I don’t intentionally aim my frustrations at him, it just seems to happen.
I miss him terribly and hate that we have been put in this situation because of my body. I long for a cuddle and a chat about nothing,to sit on the sofa with the boys and have play fights with Adam.

I really can’t apologise enough for the way in have treated him. He really is one in a million. I’d truly be lost without him in my life. He is such an incredible man. He won’t accept praise, or recognition for all he does for our family so I want to say publicly just how much he means to me and the boys and THANK YOU!!!

Next in the family is my mum. My mum who, despite her own disability, has been staying at out house to help out with sorting the house for my return home, helping Adam with his homework and being there for him after school when Paul is at work.
She has pretty much stepped into my shoes and been like a mum to Adam whilst keeping it clear that she is nan-nan.
She has been there for me when I have cried over simple things and when I’ve cried because of change. She’s researched things that would help make our lives easier and most of all she spoke to my dad when I was hysterical over the fact I couldn’t get up the stairs under my own power. Her phone call to my dad and her reassuring hug as I cried meant that there was a solution to the stairs problem and they were going to help. 
It was a bitter Pill to swallow and accept the help from them, I mean I never expected I’d need help in this way at 37 years old.
She is staying down for 2 weeks once I am finally home. I don’t know if I’d manage emotionally at home to start with without her support and understanding. Her disability means she truly understands my frustrations and anger at what is going on.
She has always been there for not just me but Paul as well. She gives him an ear to listen to how he feels (should he choose to open up), she helps put in perspective how things need to be for me when I come home and she tries to understand how he feels and thinks about things.
Again we’d be lost without her.

Then there is my dad. I’ll always be his baby girl and he’ll always do all he can to help me. Like the rest of the family he was so shocked by my diagnosis and found it hard to accept.  He offered to buy a stair lift so that I could get up the stairs and would mean I could get home sooner. This level of generosity has really shocked both Paul and I.
One thing that this admission has made positive is that I’ve gotten closer to my dad. Ordinarily I wouldn’t see my parents for months at a time but this has meant that I have seen my dad every other weekend. He drives on down (approx 1.5 hrs ) and comes straight to me. We go and have lunch in the hospital restaurant and sit and chat, not necessarily about anything but just chat. I’ve loved spending time with him, I feel like I’ve strengthened our bond as father and daughter. He has taken me on the scary journey to shop in tescos (my dad hates tescos shopping) & he’s learned how to attach the wheelchair trolley to my wheelchair!
He’s been great with the boys and it has strengthened his bond with them both.

Now my brother Steve. He is in his final year at uni and is doing so well. The past few weeks he’s been doing his dissertation. I’ve no idea what it’s about but I know he’s worked bloody hard on it!

On Wednesday I had a very surprise visit from Steve and his not so little boy Rhys. Having handed his dissertation in he had some time to pop down from Brackley and visit the house, mum paul and Lewis.
Adam was at school due to the timings.
His visit really cheered me up. Over the past 6-8 weeks I’ve had random messages saying ‘hey sis, I don’t expect a reply but wanted you to know that I am thinking of you and will visit once dissertation done’
The fact he’s taken time to message even though busy is great. He is such a soft behind his gruff exterior.
I really love the messages I get, even though some of the pics and videos are a little weird and wacky!!!
Love him, his partner Clare and the two boys Charlie & Rhys to bits.

Now the baby of the family, My brother Andoo. I was 12 when he was born so he has always been my baby!!! He is engaged to a lovely lady Shannon and they have a scrummy little boy called Oscar.
I get the odd message but tend to hear how they are doing through my mum.
About a month ago Andoo, Shannon and Oscar turned up and Surprised me. It was great to see them and see Oscar being so very cheeky. They stayed a few hours and I had a chance to chat to them about how they were getting on with work etc.

My brother Chris (Qwid) lives in Brisbane, Australia. He’s been out there for just under 6 yrs now. I miss him loads. He has a beautiful wife and 2 very handsome young boys.
We always try and arrange skype sessions but due to time differences and dodgy network we haven’t been able to do them.
Well that was until one random night. I was playing on my phone as I couldn’t sleep and all of a sudden my Skype was ringing.
When I answered it I was greeted with a live video of my very cheeky nephew Sammy. It was so funny to hear him speak as he has a mild aussie accent mixed with the Trowbridge twang. So funny.
It was lovely to see grumpy James needing more food and hanging on to Qwids leg desperate to be picked up.
I wish we were all back together at the moment. So hard knowing how far apart everyone is.

MJ is my second youngest brother. He doesnt really say have to say anything.

I real ly do have the most amazing, caring, loving & outright wonderful family and I love them all to pieces.!

I LOVE YOU Paul, Adam,Lewis, Mum, Dad, Steve & Clare, Qwid & Claire, Andoo & Shannon , MJ

Thank you from the bottom of my heart, for all you have done to me a rubbish situation so much brighter & bearable.

But didn’t quite clear it!!

Ok so yesterday I went on a home visit to try and see how I’d get on now that the stair lift is in place (thank you mum & dad!) & other equipment had been delivered.

First challenge was to get through the front door. With a bit of lifting and carrying we made it over the threshold and I was in!

Felt strange being in the house again after the disastrous last attempt!!

Next challenge was to get on the stair lift and get upstairs. I have to reach a little but made it on to the seat and after a few directions in how to use it I was soon going upstairs for the first time since the beginning of the year. It was pretty nerve wracking being lifted on a chair but I made it to the top and onto my upstairs frame.

With a lot of hard work I managed to walk with my frame to the bedroom. One thing I’ve learnt is that it isn’t easy on carpet!

I sat on the edge of my new bed and managed to get my legs on to it and with a lot of effort I managed to stand back up again so challenge no.2 complete!

Back to the stair lift and back down stairs to go and tackle the arm chair.

It’s a lot lower than I remember and was a bit of a drop to get into. 
We worked out that I needed to have my wheelchair pad under the seat cushion to give me some extra height. It was again a hard job getting up but I did it so challenge 3 complete.

Next was the challenge of getting off of the toilet in Lewis wet room. This wasn’t too bad with the frame in place. Again it will need raising to help with the lift up.  Challenge complete.

Once the OT and RA were happy we agreed I’d stay the night and see how I got on.

It was once they left that I fell apart.
I felt like such a stranger in my own home. It was all alien and I felt in the way. My mum was amazing and let me sob on her and get out my tears.

So many changes.

I knew it would be hard but I guess I thought I could just fall straight back into mummy/wife – Trish. I guess I have to face the fact that I’m not the same Trish anymore. I’m in a wheelchair, I’m weaker than I used to be and I now have to accept that I need to ask for help.

Adam had no idea I was going to be home as we hadn’t wanted to disappoint him. When he got home from school I was sat in the living room in my chair. As he walked into the room he didn’t know what to do! He looked like he wanted to jump on me, cry, grin! He decided to walk over and give me the best hug ever!  He said I had given him the best surprise ever. To see him so happy to see me home helped me drive my fears down a bit.

Lewis being Lewis was just being his usual cheeky demanding self.  He really has become a full on cheeky monkey!!

We spent the evening doing ‘typical’ family things and I then had to tackle the stair lift again. Getting in to bed was not only hard work but a relief at the end of the day. Watching my family carry on with the day to day stuff was lovely but hard (that’s a whole other post!!)

It was this morning that was hard. By hard I mean pretty much impossible!!

So after waking up disorientated and trying to work out where I was I then had to work out how I was going to get up and out of bed!!!

After texting Paul (yes I did say I text him) he managed to heave me into a seated position and I attempted to get dressed!! Not so easy when you are used to a firm hospital mattress. Then to get off of the bed. Well that was a farce and a half. My leg went into spasm, I got stuck with one hand on the free and the other on the bed! Paul had to kind of wrap his arms round me and pull me up to standing.

So then it was the walk with the frame to the stairs and my lift down! I managed to get into Lewis’ room and got myself as close as I could (wheelchairs and profiling beds don’t mix very well)
Well he was in full giggle mode and I snatched the opportunity to get in there for a cheeky tickle and a sneaky stretched cuddle. He was in  full belly laugh mode and made my heart melt yet again.

I had a big challenge to face today. It was looming closer and closer and I got more and more nervous until the time came to face my fear.

I had to play against Adam in Fifa 16!!!

I am USELESS. I don’t know the buttons, no idea what those working wobbly stick things do and well I was in for a fifa thrashing!!!

To be honest by the time I had to leave the game to get ready to come back to the ward I was doing reasonably well. I was 2-1 down and had a player sent off!! Not bad for a 1st attempt. 

The time had come and it was loading time to go back to the ward.

Saying goodbye to the kids was so so hard and I hate it.
The loading part into my dad’s car was interesting! We had a few comedy moments trying to get the frame into the car!!!

So now back on the ward it’s onwards with the physio and OT to get all things sorted and hopefully home in a week or so.

So hurdle reached and made it to the top but didn’t quite clear it.

The past two weeks have been a huge struggle both physically and mentally.

My right leg has been in a constant state of clonus since a week a go Monday.  This involves my leg carrying out involuntary spasms night and day, some more violent than others. This has lead toe being very unsteady on my feet and only being allowed to transfer when I have some one with me. It’s meant I’ve not been able to do any walking and means I’ve wasted valuable physio time working on other areas when I could be strengthening my legs.

Gemma has been a huge support through this. She’s seen my leg being evil to me and staff vigorously trying to stop it from bouncing.  She’s made me laugh with the odd inappropriate comment but on the whole has been bloody supportive.

Mel has been her usual amazing self. Coming to the ward to do both mine and Gemma’s nails. It’s was a proper girly night, not something I’ve had in a long time. She’s taken me round tescos,  come to cheer me up when down which has been quite a bit these past 2 weeks.

Emotionally I’ve been like a human yo-yo, 1 min happy and jolly, the next I’ve fighting off tears and wanting the ground to swallow me up whole.
All these emotions came to a head on Fri 8th April. I had a GPM (Goal Planning Meeting )to discuss where I was at and for the next stage of treatment.

The main point to the meeting was that on the 9th April the stair lift my parents have bought me was being installed. This was so major! I’d now be able to get up and down stairs .
So because the stair lift is in things have kind of snowballed into me being taken on another home visit on fri 15th (eek that’s today) and if all goes well and all the equipment is there that I need, then I will be staying for the night. Eek a whole night in my own bed, the first time since 2nd Jan 2016.

This is so scary. I mean I am looking forward to being with my family but I am terrified of what they expect of me. What if they have higher expectations of my abilities than I actually am able to do. I’m scared I’ll be in the way and just be a burden to them all.

I am excited don’t get me wrong. I can’t wait to see my boys but will I fit in to the family unit anymore.

It’s so scary.

Since the 2nd of January I have had to face so many challenges. Some I’ve won, some I’ve lost and others are still ongoing.

I’ve learned to sit up properly again, I’ve learned to wash and dress myself, I’ve learned to mobilise in a self-propelling wheelchair.

I’ve lost the ability to climb the stairs, I’ve lost the ability to use my bladder properly, I’ve lost my control over my pain

I haven’t yet managed to walk any decent distance but I’m trying, I’m trying to manage my daily routine, I’m trying to find acceptance of what has happened to me, I’m trying to accept my change in family set up.

Each of these tasks I’ve tackled head on, I’ve not given in to them with ease and I’m fighting hard to win the ones I still face.

I’ve now been set a new challenge. One I hadn’t expected but I will tackle it head on.
My godmother has challenged me to cook her a meal in my own home. Now this is a challenge worth laughing at. I’ve not cooked in nearly 4 mths and it never was the greatest!! Not sure whether she knows how bad my cooking is but hey I’ll give it a shot.if it doesn’t work out there is always a take away!!!

SN Mum

Posted from WordPress for Android

How many times in our daily routines do we carry out tasks without even thinking about what we are doing?  Making a drink, going to the loo, making dinner, popping out to see a friend.

I think I’ve become too comfortable in parts of my therapy.

I’ve been confidently transferring from wheelchair to bed/loo/bench with my frame and I’m guessing I was too comfortable with it.

On Saturday I learned the hard way about not getting to comfortable.

I had my first fall where I ended up flat on my back on the floor of the bathroom. Rather humiliating and I felt like I’d really had the rug pulled from under my confidence.

Sunday whilst transferring from my chair to bed using my frame I experience an amazing drop straight onto my coccyx, whacking my shoulder blades on the bed frame and feeling like I’m a complete plonker!

Since 10pm last night my right leg decided to go in to an almighty spasm and 21hrs on it still hasn’t let up and I’m in agony & exhausted.

It’s really worn me down physically and emotionally. I really want to progress with my therapy but falling and jumpy legs are breaking down the head space I need to get going.

I know I’ll get back to it but at the moment my emotions are running the show and I’m going to have to work on getting my head round it all. I guess it scared me because what if it happens again,at home or here? I can’t do anything reliant on my legs as I just don’t trust them.

Being away from my family is really hurting and every goodbye is harder. These falls and lack of trust I have is going to keep me away longer.

It’s ridiculous I know. I know people have falls all the time but it’s a new thing to me and it’s flipping frustrating.

One lesson learned!! When you are carrying out a task don’t let it control you, don’t get complacent and comfortable.

One confused lady signing out to try and get this muddle sorted.

SN Mum

Posted from WordPress for Android

There are many people I’m our lives who try to understand exactly how you feel but until you’ve been in that situation you just can’t understand fully the true impact it has on a person.

It’s been quite hard here at Snowdon as all the patients except me have got a brain injury of some sort, which has made finding someone who understands where I’m at very difficult

That was until 2 weeks ago.
I was asked to make 2 new ladies feel welcome to the ward and have a chat about things etc.

Well I’ve met the person who actually understands how I feel, what I think and has the same family values as I have.

The lovely Gemma has come to Snowdon after being diagnosed with Cauda Equina Syndrome. She has been left with a lack of feeling from the middle down and has a right leg that won’t work. She is a doting mum of two beautiful children and she is finding it hard being away from her kids.

We talk every day about how we feel about things and we pick each other up when we are down.
She has introduced me to the Spinal Injuries Association  (SIA) where I can get support.

Since being diagnosed with Transverse Myelitis I haven’t been given any information about it or been told about support networks like SIA.
Although I clearly know I have a spinal cord injury, I haven’t been told I can have support from these places.

Gemma has helped me emotionally when I’ve struggled to see beyond my immediate problem and she’s made me laugh so many times.
I haven’t felt comfortable talking about things like my catheter and such but she has helped me by explaining her situation.

It’s amazing the people you meet on these horrendous journeys. Everyone pulls together and watches our for each other.

SN Mum

Posted from WordPress for Android