Our wedding date is set for the end of next year and we couldn’t be more excited. The kids ask ‘how much longer” almost every day, and are very much looking forward to playing their parts on our special day. We have got well and truly stuck in to the planning and booking of our venues.
This is where my arsenal of equipment that holds my body together will come in handy. We will be splinting up my knees and ankles in the hope that I can hobble down the aisle on my walking sticks. I’ve currently got a Pinterest board dedicated to walking sticks in different shades of white/ivory/champagne so that once I’ve brought my dress I can match them. However if I have to roll down the aisle that’s fine too (it’s what I do every Sunday anyway 🤣 during mass), so I can always spruce my chair up with flowers.
One of the big factors for us is getting me through the day without a trip to A&E or an ambulance having to be called. Sounds simple really, doesn’t it? Yet it’s a very real possibility. I tire very quickly these days and my body goes downhill when that happens, so utilising my aids and working breaks into the day/sitting down frequently will be important. Having these planned in advance seems best for not running out of spoons* too quickly.
I’ve spoken to our photographer about my disabilities and he’s had experience with people with similar issues. Hes happy to listen and go off what I’m saying. If I’m doing well then fab, not feeling so hot then that’s ok too we can rejig positions. I was quite nervous about this conversation so this was a big relief that he was cool with it.
I’m ever so slightly taller than my partner which I am over the moon about as it removes all temptation to break out the heels I hung up years ago. I used to love love love a chunky wedge heel. But it’s just asking for trouble. So sensible flat shoes it is with good ankle support it is – to be honest I’d be quite happy barefoot but I think the church and the hotel wouldn’t be as thrilled. I’ll be gradually breaking these in as part of my EDS means my skin breaks super easily. It takes me months to adjust to shoes even when they’re a perfect fit without my feet bleeding.
After spending the last several months in and out of hospital, losing the sight in my eye for an extended period of time and only partially regaining it, losing all sensation in my right leg and experiencing sensory issues in my arms I was once again told it looked like I had MS. Yet the examinations didn’t agree. I was left battling for help as different hospitals and departments seemed to find it impossible to communicate with each other. Well the most recent test results are in! We finally have an answer.
If I am honest I had almost given up on a diagnosis other than unknown complex neurology condition with global sensory loss. None of my Drs were communicating with each other, no one could agree with each other and that was resulting in me receiving no treatment. It has been a period of high stress and extreme emotion.
Today I finally had my Emergency Video Consultation with the local specialist in Neurology; this was requested back in October. Firstly they are agreed it isn’t MS which is great confirmation. What they are sure of is that is another part of my Ehlers-Danlos Syndrome. Apprerently when I’m dislocating my knees the nerves around it are being over stretched and damaged hence the loss in sensation/function. The same thing had happened to my elbows causing the sensation I was getting in my lower arms and hands. This surprised me greatly; mainly as I had in fact asked the doctors this very question when I was on the ward last year and they laughed at me for suggesting it. In regards to my eyes the nerves are not communicating with my brain effectively, but are not damaged like you get in MS.
He’s suggested we get me booked in with my EDS consultant for some advice in the meantime on how to cope with these symptoms as they can last a significant amount of time.
So whilst the EDS is generally on a slippery slope currently and it’s all about managing it, keeping on top of my pain and being proactive, I feel that overall it was a very positive chat.
Receiving post is a very everyday aspect of life. Normally it’s not something that I would get over excited about. Every now and then though there is an exception. I received today three different types of support splints that the hospital had decided to order for me. The team I was under in the hospital witnessed several of my dislocations and noticed general issues in my hands and feet that could be improved with ease.
Three of the four splints arrived this afternoon. Two are designed for my wrists and thumbs. Part of the issue with EDS is that the brain does not always know exactly where the joints are. These splints help provide feedback to the brain along with stabilizing the joints.
The third splint is a gel ankle brace. If there was an Olympic medal for ankles giving away and falling over, I would take the gold every single time. My ability to fall down curbs, over thin air, and up the stairs is impeccable. The gel supports on both sides of this will cushion the joint whilst aiding stabilization. My skin breaks very easily due to the EDS so this design should work wonderfully with my skin.
I am hoping that the splints as a way of treating the EDS, and my upcoming Botox injections, should mean I spend less time hugging the floor.
Today was the first time I have had to give in and use my wheelchair at uni. I had anticipated that today would be harder than usual as I had traveled to London yesterday for my routine injections. My body always reacts badly to them for the first 24 to 48 hours, normally this leaves me in a lot of a pain and with an increase in spasms, which with a mix of painkillers and muscle relaxants I can manage. I therefore had not expected to fall over when getting out of bed this morning. My back and neck had gone into a hideous spasm and my brain had functionally paralysed both legs and my left arm. I spent half an hour lying on the floor like this, debating what to do. I gave myself an hour in which if I managed to get dressed I would venture to uni in my wheelchair and braces, and if I was still on the floor I would ring the Wardens.
I felt extremely proud of myself that it only took half an hour to get dressed this morning despite my brain fighting me, this must be a new personal best. I admit that as I braced the majority of my body I was extremely nervous. My peers are aware that I am ill, but they have never seen me like this, I had no idea how they or my lecturers would react. Within minutes of being in uni my nerves were swept away. Not only did no-one bat an eyelid, but people helped me when I needed it without me even asking.
Part of me had strongly wanted to not go in to uni today. I was worried of what others would think, and how I would physically cope, I had already had several draining days and was concerned that this on top would be too much. I am extremely glad that I took the leap, and forced myself to go. It will help keep my mind at rest the next time my brain decides that a day of alternating between spasms and paralysis would be fun.
When I saw my personal trainer Beckie the other day she pointed out to me that she had trained with me for a year now. Reflecting together on the progress I’ve made in the last year was a real eye opener. I think sometimes I forget just how much I have improved, I allow myself to become absorbed in the pain and the spasms. I focus on fighting constantly against the Dystonia. When I met Beckie I could barely stand for even twenty seconds without my legs spasming, my whole body out of control, I was completely reliant on a wheelchair. Lyme disease was eating away at my life and I was fighting what felt like a losing battle.
I remember the first time Beckie came round; it was a meeting between herself, my mother and I, to discuss what exercises I could do without setting a seizure off. Although our aim has always been to not trigger a spasm, I’ve always made it clear that if I spasm, I don’t mind. Let’s pause, wait for it to pass and then carry on. I’ve carried on with my mind-set that my brain will learn (I understand that this is unlikely but a girl can hope)! When we began it was completely baby steps, learning what my body would cope with and what would cause it to throw a complete fit.
Now, after being on Lyme treatment for a year, and finding a regular Botox regime that works for my Dystonia, I am capable of so much more in our sessions. Some exercises still cause my body to go into spasm, but I apply the same method as I did a year ago, pause, wait and then continue. It works every time. Beckie has helped me strengthen my joints after my body successfully caused a lot of damage to them. I will never forget the look on my physiotherapist face when she first assessed my legs and realized the damage the spasms had done to the ligaments. I’ve gone from not being able to stand for more than twenty seconds to being able to walk. I admit I need knee and ankle splints to be able to do so, and sometimes I need walking sticks, and if I’m having an awful day I rely on my wheelchair. BUT I have made so much progress. I don’t reflect often enough. Looking back on this time last year I cannot believe how far I’ve come. I look forward to the progress I can make in the months to come. Learning to manage these conditions one step at a time.
I haven’t posted anything in almost a month as I have been bursting with such amazing news that I wanted to share around Christmas. As many of you know each year since I got ill in 2012 my goal has been to be able to walk by Christmas. It never mattered to me whether that was with the use of splints, walking sticks etc., as long as I was up and out of my wheelchair and back in control of my legs. Thanks to the private hospital I am under who are treating me for Chronic Neurological Lyme Disease I now know how much of my body is Lyme and how much is Dystonia. I am absolutely thrilled to say that my jaw, neck and my arm twitches/jerk spasms are all of me that is Dystonia; I could cry with happiness just writing that as I am extremely lucky that these three are controlled well by injections and medication.
I’m still having a lot of physiotherapy to help me learn to walk, and due to my EDS type 3 I have to wear a number of splints on my legs to help support my joints. I even have funky pink polka dot walking sticks. I’ve got a lot to learn still as due to my damaged ankle ligaments I fall over a lot, this recently resulted in a dislocated finger and broken tendon. However that is minor in comparison to the joy I feel. The private hospital I am under have decided to prescribe me another 3 months of medication, along with running several new tests, but that’s a separate blog post for the New Year.
My neurologist has been so supportive, when he first met me I was unable to walk and even attempting to stand was rather risky. It is great to be able to go for my injections and see how thrilled he is for me. He is pretty sure that the Chronic Lyme is what caused my Dystonia due to damage it can do to the brain. Although the spasms I am left with are painful, and my Oromandibular Dystonia can cause my jaw to dislocate, my symptoms are much more manageable now than what they were!
On that positive note I would like to wish you all a very Happy Christmas and a Fantastic New Year! I shall be back to my regular blogging self in the new year.
The other day I wrote about how negative the majority of my appointments have been recently.I am thrilled to say that this trend has not continued recently. Last week I attended a physiotherapy session, I had gone prepared to do battle and expected to be discharged at the end of the appointment. I could not have been more wrong! The appointment on a whole was extremely positive and uplifting. I made such progress last week that I could not believe it, I don’t think my physiotherapists could either. I wore my splint for the entire session which enabled me to do more as my spasms are contained to a degree. My physiotherapists have not run a full session with me wearing my splint before, and I think they were quite amazed at the difference it makes. We are hopeful that the upcoming adaptations to my splint which in theory will contain my spasms further, will enable me to walk properly as my foot should not be able to turn upside down.
I met with the Orthotics today to discuss the adaptations that are going to be done on my splint. The original plan had been to make one that would fully encase my leg, however this had several risks to it. At the moment several of the straps on my splint are slightly elasticated, this is great for comfort but when my foot spasms it means it can get into pretty much any position it feels like. Instead of going for a full on enclosing splint they are going to swap the current straps for more restrictive ones with no give to see if this makes a difference. Hopefully it will, and if it doesn’t then we go back to the original plan. I also had splints fitted to both of my knees while I was there on the request of my physiotherapists. The idea behind this is that it will prevent my knees bending back as far due to my hypermobility, and they hope that this extra support may lessen the spasms in my feet. They have no idea if it will or not but it is worth a try.
Luckily these knee splints fit under my trousers as they are rather bulky! However to show you all what I am on about I have taken a photo with them over my trousers.
I’ve had several appointments with different professionals recently with mixed results. At the moment I feel like I am at a stalemate with my physiotherapists with them determinedly ignoring my Neurologists instructions to see me weekly and me refusing to let them ignore his instructions without putting up a fight (in a calm but firm manner). When I last saw them they gave me exercises to do at home and said they would see me again in two weeks. However if they get their way this will be the last time they see me, as they feel that until I can weight bare there is nothing more they do to help me.
Now I have to bite my tongue every time they tell me this as it was they who told me that I must absolutely not weight bare! As you can imagine this has left me very confused. To add to the confusion, only the other month they informed me the ligaments in my foot were damaged and extremely lax due to my spasms hence why I am not allowed to weight bare, yet now weight baring is all they are focused on! Whenever I ask how my foot is to heal they tell me that is up to my Neurologists plan. The worrying thing is other than more physiotherapy there is no plan of action, when I last saw my neurologist he explained he had limited resources so treatment was limited.
One of my physios big things have been that I need to get myself a new splint made, as they have now decided they are not going to refer me for a second skin one, though it has not been explained to me as to why. I saw my local Orthotics department on Friday, he was a very lovely man and I must admit that I was slightly amused to see he shared my frustration at my physiotherapists as apparently they should have written to him if they were going to make recommendations on splints. He informed me that in his entire career he had not seen such force in spasms and he did not think that splints would be of any use to me. He was concerned that if he made a splint that contained my foot all the way round then I could end up severely hurting myself when I spasm. I can see where his concern is coming from, and he is most likely right, however after much pleading from me he agreed to get his colleague who has dealt with my spasms before to take a look at me and make the splint. Even though I know this splint could result in injury, I am willing to try it. I am willing to try anything that may contain my Dystonia and make my life easier! It holds the possibility of enabling to me to walk if it works, I would happily risk injury for the chance to walk again. He couldn’t believe that my physiotherapists were not helping me more and that my Neurologist was not injecting my foot with Botox simply because I had been told not use it.
I feel like every professional I talk to at the moment contradicts one another! To me surely everyone should be saying right so the spasms have damaged your foot, let’s look at what we can do to prevent it from deteriorating any further than it already has and what we can do improve it. Surely that cannot be that hard to agree to try to do?!
On a brighter note I had a fantastic appointment with Rheumatology this week. I went to have my Hypermobility Syndrome assessed. It turns out I have Hypermobility pretty much throughout my whole body. He has agreed with my Neurologist that I need referred to an inpatient rehabilitation programme due to the pain and weakness in some sections of body. I found it very reassuring to hear him talking about the same inpatient programme despite not knowing it had already been talked about with me. In this regards everything seems to be going in the right direction.
Last Friday I attended my rescheduled Orthotics appointment. I was unsure whether there was anything they would be able to but my worries turned out to unfounded. The decision was made that no permanent alterations would be made over the christmas period as that would involve my splint being taken away. Instead elastic type material (but not as stretchy) was attached in a figure of 8 pattern to my splint over my ankle area, my normal velcro strap then went over this to reinforce it. If this design manages to hold my foot in place then my splint will be sent off to have these made permanent. At the moment it is looking positive and doing its job.
Yesterday I went up to London to see my Neurologist. He gave me my usual six injections, which have such a fantastic result. After showing him a photo of my foot in spasm that I took the other day, he has offered to next time administer some Botox injections to my calf and foot. I would be very interested to hear from anybody who has received injections at these sites!
I am still taking medication to treat Chronic Neurological Lyme Disease, since I started these medications around six months ago I have had amazing progress in areas affected by it. So much so that my neurologist even remarked how happy and amazed he was to see the improvements. I am still, with the support of my neurologist, battling to receive IV treatment for Lyme Disease which will hopefully get rid of anything the Oral antibiotics have missed.
Everything seems to be quiet calm for once. Now that the Botox controls my most painful spasms I have been able to reduce the amount of painkillers and muscle relaxants I take. This has resulted in me feeling much more with it and my brain feels less foggy. It all seems to be calming down just in time for Christmas and my Birthday, which is perfect!
The last several days have been very busy and very positive. I finally feel that I am getting things in place that I need and have an aspect of control. As I have little control over parts of my body, having control over some aspects of my life is very satisfying and makes up for my Dystonia alien crazy ways.
This coming Monday I am going to my local hospital for an appointment with the Orthotic department. My splints have served me well over the last few months, however as it has gotten colder my spasms in my legs have gotten worse. My right leg spasms so strongly that it often manages to escape my splints. I am hoping Orthotics may have an idea of what they could do to help. If not I have some images of some splints that I think may be able to contain my legs. It would mean having a solid front section to the splint as well as a solid back, this I think would work well as it would be a lot harder for my leg to break through. I’m looking forward to hearing their ideas.
When the Dystonia hit my legs I was given your standard NHS wheelchair – lets describe it as sturdy. My poor mother struggles to lift it in and out the car, and watching my friends lift it makes me feel awful. Recently however the functional paralysis that I experience on and off has meant that my wheelchair needs some extras added to it but this is not something that is possible. This has meant that when I have an episode of paralysis affecting my back I have ended up flopping half out the wheelchair and being stuck till it comes back.
So after a couple of weeks of pointing this out repeatedly to the NHS Wheelchair service I am now being reassessed to see if I qualify for a voucher that would enable a chair to be customized for me. Even better news is that the even with all the extra things added to it the chair will still be much lighter than my current one.
Knowing that my splint and wheelchair issues are going to be dealt with has given me such peace of mind and enabled me to relax. They are such small issues but in the long run have a big impact so having the two solved will make a big difference.
Last Saturday I attended a bring and buy sale at my local Church. One of the stalls was raising money for The Dystonia Society. In the end just over a £100 was raised, which is incredible. I would just like to say a huge thank-you to everyone involved.