Support Networks

I’ve been a member of CMT UK for sometime now, and I have always skipped by the invitations to the West Midlands group meetings that I find in my inbox. Mainly because I’m usually always working. But since the pandemic, it has made getting together so much easier. I also had a worry that I wouldn’t fit in or have anything worthwhile to contribute. I find some meetings can be challenging and clicky when a newbie shows up. But it was nothing like that at all.

So, Wednesday evening I logged into my first ever meeting. Not quite knowing what to expect. But there I met 5 other members that have CMT not only that but 2 others had the same type as me CMT X! Everyone was so welcoming and friendly and they put me at ease straight away.

It was refreshing to hear that I’m not alone in the challenges I face. We were able to discuss everything from cold feet to splints to physio to pain relief and sleep apnea. I also discovered these members also shared the same neuro physio as me and have seen som of the same consultants at the QE. We were all able to offer advice and support each other.

I most certainly will be doing that again. As I almost felt like I was normal with how I feel and what I’m going through. I’m not alone in this and that makes me sad, because it means other people are going through similar experiences as me, yet happy at the same time because I know there are people out there who get it and have an understanding of this horrible condition.

Two Years on from Surgery

Next week marks the two year anniversary of my foot reconstruction surgery. The journey has not been an easy one, made more difficult with the Covid pandemic hitting during my recovery.

So where am I today? Well… with physio interrupted due to Covid restrictions I have had to ensure I keep on top of my physio exercises. My foot was starting to turn over the arch, and in order to rectify that I have had to work extra hard in strengthening my tendon that hadn’t been used in a while. To help with that, the wonderful orthotics team at the Alex made me some custom insoles. They took a while to get used to. But now I don’t even realise they are there.

In October of 2020 I went back to theatre to have the metal work removed from my foot. That was challenging. In hindsight, I never actually rested like I should have done, and became increasingly frustrated at the pain and inability to walk as I was before having the metal work removed. We had a planned trip to Alton towers 9 days after the surgery , and I was too stubborn to use a wheelchair…. Which meant I suffered big time for it!

Last month I met with Mr Brown, my surgeon. He seems perfectly happy with my progress on my Right foot. Where I thought I may need to go back into my night splint, Mr. Brown suggested concentrating more on stretches and not to use the splint at all. This was music to my ears, as sleeping in that awful thing was horrendous. Mr Brown and I felt that it was the right time to be looking at reconstructing my left foot. I have been listed for theatre, but due to the backlog from the pandemic, there is a 12 month wait. This time though, there will be more work done to my foot, in two stages.

Stage one is exactly the same as before; breaking my heel, shifting it to the left and having it screwed. Then the first metatarsal osteotomy and pinned. Then I will have the tendon transfer from the inside of my foot, to the outside to assist with the foot lift. All of this will be done in one go and then I will spend ) weeks in plaster.

Stage two comes 6 weeks after the first surgery. Where I will go back to theatre, my big toe will have a tendon transfer, the bone broken and reset. Then the other toes on my foot broken and pinned. At this point I will go back into plaster for a further 6 weeks.

After a total of 12 weeks in plaster i will begin on the road to recovery again relearning how to walk and training my brain on the new functions of the tendons.

One thing the first surgery taught me and that was, it isn’t as bad as it seems and that a positive attitude goes a long way during post op recovery.

CMT will not beat me!!! I will fight to be as independent and mobile as I can be. It will never hold me back!

6 weeks (+2 days) post op

These last 6 weeks have flown by. This week I have had my 6 week review at the Nuffield Orthopaedic Hospital in Oxford. Before I tell you about my progress, let me fill you in with what’s been happening these last few weeks.

As you are aware after the 4 week post op mark I was able to partially weight bear, which made me a little bit more stable on my crutches , meaning I could use the wheelchair much less, in fact I hardly use it at all now.

It seems that although I am a little bit more stable, it does not eliminate the risk of me falling. On Friday I took a tumble whilst using my crutches. I’ve had a few falls since having surgery, but the cast has been a great protection. This time my cast was loose as the swelling had gone down, so following the fall my pain became unbearable and my neighbour took me to the Accident and emergency department to get checked out.

I was informed that there was an inconsistency on the X-ray. But couldn’t get any further details without going to fracture clinic after the week end. So spent a whole weekend worried I had caused damage to my foot.

Fast forward now to my review … After going into a new plaster cast, Mr Brown reviewed my Xray and was very pleased with my healing and progress. So much so, he brought my recovery plan forward by 2 weeks. He said I was a model patient, and can now start to fully weight bear on my foot and come out of plaster for an hour a day to do gentle exercises. This usually occurs at 8 weeks post op!! But now I have a 2 week head start on building up my strength and get moving on my road to recovery.

Once home I started to exercise my foot. Not only was it very stiff, but it took huge amounts of concentration to be able to move it, as the new tendon wanted to pull my foot right instead of up and down. It’s going to take sometime to reconfigure the brain to teach the tendon a new way of doing things. After 15 minutes of exercise I found my self physically and mentally drained. I will keep working on it.

The pictures below shows my Xrays. The heel is screwed in two places and a plate on top of my 1st Metatarsal. The tendon transfer doesn’t show on Xray.

4 weeks post op

So today it’s exactly 4 weeks post op. I’m really pleased with how the recovery is going. I’m pain free now, although being in cast can be uncomfortable at times. My wounds have healed really well and from today I can partially weight bear. Although I admit to having started doing this a little earlier, and I’m coping with it really well.

I’m actually starting to think more positively and that I’ve made the right choice in having this operation. Previously I was doubting my decision, partly due to fear of the unknown. But in light of my good recovery so far, I know I can recover well from this and be back on my feet In no time. I have the determination and positive attitude to get the best outcomes from this.

In 2 weeks time I get to go back to the Nuffield orthopaedic centre to see the consultant and hopefully, both X-rays the and examinations will agree with how I feel about this recovery.

Can’t Sleep!!

Well, I knew I was having quite a good run lately. But CMT is the cause of my insomnia tonight. I’m in so much pain!! I’m not talking about pain due to my operation, this is different. This pain I live with day in day out on a much lower level that I can usually cope with. But tonight it’s off the scale!

The only way I can describe this is by likening it to tooth ache, very very severe toothache that has taken over both of my legs and also my hands and arms. It feels like my legs are made of concrete, and when I walk it’s like walking through thick deep mud. I know it’s bad, because it’s woken me from quite a deep sleep. My hands feel heavy, clumsy almost. There is nothing and nowhere I can put my limbs that will make this any better.

Pain killers have never helped in this situation to free me from this awful and debilitating pain. Yet I have still taken them, hoping that by some miracle they might actually work this time! Imagine this pain as a gigantic iceberg with a big pointed top. All the pain relief ever does is round off the tip, taking away only the slightest bit of sharpness. I wish I had a hot tub right now as they help loads. Maybe even a hot bath, but in this plaster cast I just wouldn’t be able to get in or out safely. The best I can hope for is sleep to take me away from it for a while. But even that’s not going to happen now.

How long this will last is anyone’s guess. Sometimes it can be over in a matter of hours. Yet other times it goes on for several weeks until it subsides to a more manageable level.

I’m sharing this with you now, ( during CMT awareness month) as many of you don’t realise this struggle. It’s locked behind our closed doors and only my family get to witness what this horrible condition puts me through.

I’m going to go now and try hard to sleep. Goodnight all, thank you for taking time to read this xxx

25 days post op

25 days since my operation! That’s almost a month! Where does the time go?

On Monday I can start to partially weight bear on my right foot, which will help a great deal with Balancing on the crutches. But first, let me update you on how things have gone so far.

I am now pain free and have been for almost 2 weeks. It’s been a while since I’ve taken any pain relief, and even then it was only a couple of paracetamol. I find that incredible, given the extent of surgery I have just been through. It does make me wonder if my naturally high pain threshold has kicked in and now the pain is at a manageable level for my body to be able to process without the need for analgesics. Who knows? And I’m certainly not complaining. I do however get uncomfortable in my cast. Quite often towards the end of the day as the foot swells. But that’s easily managed with rest and elevation.

I have been managing to get out of my cast for 10/15 mins a couple of times this last week. But this requires support and my youngest Daughter Ellie has been so kind in helping me with this. It’s really important that the underside of my foot is supported to keep it in the neutral position while out of the cast. Not plus has Ellie managed to do this, but she’s also been able to assist me to take care of my foot by washing it and then massaging Bio oil into the skin. Since we’ve done that a couple of times it’s incredible how good my foot now looks. The healing process has gone so well!

The most annoying thing is that I still cannot get out anywhere with out relying on someone else to help me. This is what gets me down more than anything. I sometimes feel the walls of the house closing in on me. I know it’s not forever, but it doesn’t stop the claustrophobic feeling inside. That said, I’m mastering the use of crutches and thankfully haven’t lost my footing or fallen over despite me using the wheelchair less and less. I’m trying to build up my strength and move around more. I’m not entirely sure how, but I’ve lost half a stone since surgery. How does that happen when I’ve been sat around doing very little?

My scars are healing well by all account and I’m thrilled with my “new” foot. The shape and everything. I just hope that the surgery has worked, and that when it comes to walking again, my joints are more stable and the pain stays away. I want to be able to do some of the things I’ve so dearly missed doing. The pictures below are my foot as it is today. And me mastering the crutches!

15 days post op

I’ve been home now for 15 days. When I say it like that I find it amazing that 15 days have flown by. Yet in reality as I’ve lived through these days they have really dragged.

Pain, nausea, discomfort, difficulty getting around and insomnia, all of the things that have caused me tremendous challenges. Yet I’ve found that keeping myself occupied has been one of the greatest challenges. Before my operation I asked around for recommendations of series or movies to watch. I just cannot focus on TV at all and nothing really appeals to me. I have started my cross stitch, which has occupied some time and now I’m starting to see it come together it’s been enjoyable. But there is only so much you can do in a day.

I’ve had some company whilst I’ve been recovering, which has pretty much kept me sane. My mother and father in law Barbara and Monty have both been over during week along with my Auntie Carole. Between them they have ensured that I’ve had company and also provided practical assistance with jobs in the house and taking me out for a change of scenery, from help to get into the garden to enjoy the sun, to going into town for a coffee. These interactions have broken up the monotony of the day while Wayne is at work and the girls are at school.

Despite the kindness and thoughtfulness of my family in keeping me company, I have found myself feeling incredibly down towards this weekend. I’m having to rely on my children and husband to for far more than I ever have had to before. Making meals, drinks, ensuring items are placed where I can get at them, getting clothes out of my wardrobe. They all tell me they don’t mind doing these things, but I cannot help but feel a burden. That’s why I try hard to do as much as I can for myself. Sometimes possibly putting myself at risk. I never brought children into the world to become my carers and I certainly never married Wayne for him to become one either. My heart breaks just a little each time I feel I have to ask for anything. I’ve always been so independent and done everything myself, even down to raising the girls. I’ve heard the little sighs and seen the eyes rolling as I’ve asked for things to be done. It’s a teenage thing I guess, but I don’t think they realise how each time these little things hurt me inside. They hurt me because I should be doing them myself, yet I can’t and don’t want to risk damage to the tendon that’s been transplanted to a new bone.

We’ve sat as a family and discussed this, especially how all this makes me feel, so that they can understand from my perspective. In an attempt to cheer me up, while the sun was shining my lovely family took me out for a walk ( a push) around the lake, which ended up a 6 mile jaunt and an extremely tired family and doggies afterwards.

I am so lucky and blessed to have a wonderful family.