Posted in Archive, January 2021

The Test Results Are In

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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.

Posted in Archive, Novemeber 2020

The Elephant

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I live with an elephant in the room; it comes with me wherever I go. Some people don’t mind the elephant, some have one of their own, others have a dislike for these elephants. It’s not always clear as to why. Maybe it’s worry, perhaps lack of understanding, and sometimes it’s ignorance.


Learning to accept my elephant of many names was a task that took great strength and many many years of learning to love myself all over again. I’m a sensitive soul; when my elephant upsets others it’s hard not to be offended. But I cannot change what I am, nor the diagnoses attached to me, or the symptoms that are ever present. Therefore the elephant is always in the corner. Sometimes small, sometimes big, sometimes putting on quite the performance.


However, I am who I am because of the path my life has taken. Disability has taught me a lot about myself, and it has opened my eyes to the need for self advocacy in a world that is a far cry from being disability friendly. The next time you are in a room with an elephant, address it, embrace it. Disability elephants are not scary things.

Posted in Archive, Novemeber 2020

Who to Turn To?

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After a week long stay I was finally discharged from one of our local hospitals yesterday evening. I was admitted due to pain in my left eye which has optic neuritis, it had become overwhelming, to the point I felt I had to apply pressure on my eye to relieve it. I had also lost the sensation in the bottom half of my right leg.

During my time in the hospital they decided to carry out a Lumbar Puncture and MRI knowing that my neuro team wanted to do these anyway. The LP side effects I’m still dealing with, I am still having issues with my bladder, my whole leg now has no sensation, and I have a permanent horrondous headache. Both tests came back clear which left the dr’s there confused. On discharge I was diagnosed with Complex neurological disorders and global sensory loss in the right leg, and told my neuro team would take over figuring out the cause.

Today I had an Opthalmology appointment at another hospital. The opthamologist in charge of my care is wonderful. I sat down, he faced me and said “So you have MS ” he was quiet matter of fact about it. I corrected him and pointed out that my tests had come back clear. He muttered that they were wrong and went on to examine my eyes. After several tests he sat back looked me in the eyes and again said “Rebecca you have M.S”. He was quite insisted that my doctor’s must have missed something on my scans due to the state my eyes were in.

So where do I go from here? Such wildly different view points, everyone agreeing that my local neurology team needs to see me again and review what the different teams have found. However getting hold of them is darn impossible. Both myself and my gp surgery contacted them a few days before I was admitted informing them I was going downhill, and needed input desperately. Neither myself or my gp’s surgery has had a response yet.

Right now I’m very emotional and very stressed. I’m taking things moment by moment and trying to just accept things as they are and get on with it. But I work best with action plans and right now I don’t even know who’s responsible for my care. I feel very lost in the system.

Posted in Archive, Novemeber 2020

Local Anaesthetic and Me

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When I was 17 weeks pregnant with my daughter I underwent surgery to remove a mole on the underneath of my right breast that had early cell changes. Due to the fact I was pregnant and it was a relatively short surgery they didn’t want to give me a general anaesthetic, so decided a local would do. Unfortunately my Ehlers-Danlos means I have no response to local anaesthetic and felt every cut, and every stitch. The whole process was rather traumatic and I’ve worked hard at trying to forget it.

I was admitted to my local hospital a couple of days ago due to worsening symptoms in my eye and leg. Due to this it was decided last night to bring my lumbar puncture forward to that evening. I explained that local anaesthetic does not work in the slightest for me. They decided to give me a double dose in the hope it would work; it didn’t, which I expected, maxfax team has tried injecting several times this amount with no effect previously. Now lumbar punctures are known to be painful anyway, so to know I was having one without effective pain relief was nerve wracking to say the least.

It was one of the most agonising experiences I have ever had. It took multiple attempts to place the needle correctly as they found the spaces inbetween the spinal collum to be be extremely narrow. It’s been just over twenty four hours since and I’ve struggled to move. My whole back is in horrondous pain, taking a deep breath or swallowing liquids really seems to agreviate it. I’ve also lost sensation over my waterworks which is concerning. I’ve spoken to the consultant but everyone’s answer over this is that I need an MRI, which apparently is booked but no can tell me a day or time.

I’m missing my kids loads but I know that being here is where I need to be. If this helps put a piece of the medical jigsaw in place and leads to better management that can only be a good thing. Just got to take everything one moment at a time.

Posted in Archive, Novemeber 2020

Vulnerability is Strength

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It’s a painsomnia night so I thought I would share with you all something that I’ve been coming back to frequently recently. Personally I’m a very sensitive, emotional person; now some may view that as a bad thing, others a good thing, some of you will be neutral. I can see the pros and cons, but it’s what makes me me, so yes I may cry buckets everytime we watch certain episodes of Vikings, or The Lion King but i’ll also laugh myself to stitches five minutes later. It’s a rollercoaster of life. It’s real, honest and truth.

So why do I, and I know many others with chronic illness will be able to identify with this, go on autopilot everytime a doctor, family member or friend asks after us? You know the drill, you walk into the drs room the doctor greets you and asks how you are before you get down to the nitty gritty. It’s a formality, so like a healthy person you respond with I’m good thanks, and you? It’s ridiculous! Why is it so hard to say you know what I’m actually not great at the moment and I need some help.

I forced myself to do this yesterday. I could hear the usual auto response slipping out my mouth, so I caught myself, took a breath, looked the doctor in the eye and said I’m pretty awful and I don’t know what to do. Now saying that wasn’t easy but boy did the relief for sharing the burden feel good. Making that choice to let the facade of I can cope with everything slip for a moment to ask for help took an incredible amount of inner strength and it’s something I’m going to practice doing more often. Vulnerability is not something to view in a negative light, in fact it allows others to reach out and see if they can improve your situation. Sometimes just talking things over can make a difference.

So just pause for a moment and think; are you like me and guilty of putting walls up? Is it worth flexing your inner strength and letting that vulnerability show? Let me know what you decide to do!

Posted in September

What Can I Do For YouToday?

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What can I do for you today? It’s the standard greeting I find I’m met with at every doctors appointment, no matter the speciality. Perfectly poliet, open ended so therefore inviting me to dive in to the promblem that has brought me to their office. Expcept lately that is not how that questions makes me feel, it leaves me biting my sarcastic answer off of my tongue. Fix me, take my pain away, how about just stop my constant deterioation please and i’ll make do as I am but please press pause in the meantime. Let me correct myself, it’s not sarcasm, it’s truth, it’s honest words from a scared vulnerable person who wont utter them because I know the reality is the Drs are trying but their isn’t much they can do.

I was diagnosed yesterday with Trigeminal Neuragia, along with being informed they no longer expect the sight I’ve lost (the majority of it) in my left eye to return; I can see blurry outlines but I cannot work out shapes or distance. It was a bit of a hit emotionally as whenever I have had Optic neuritis before my sight has recovered fairly well, however this has been going on for a while now and if anything the pain has gotten worse behind my eye, it is incredibly intense. I’m trying not to dwell on this too much while we await my Evoked Potential results and wait for a date for my lumbar puncture test. Hopefully these tests will shed some light as to what is going on currently.

In the mean time I feel much like this blog; I am all over the place, one minute quite happy dealing with things as they come, the next frustrated that despite almost a decade of chronic illness a level of normality is yet to be reached. I’m still fighting against the current of deteriation. It may be as useless as trying to swim the wrong way around wild rapids but it helps to know that I am trying to do something to counter the every growing pill box.

Stock photo of pillbox

Posted in Archive, October 2020

New Found Independence

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After discovering recently the wait to be assessed in my area for an electric wheelchair was likely to be several months if not more, we decided to explore what other options were out there. My happy accident after days of searching and getting to the point of really feeling like I was just going to have to accept that I was essentially mainly house bound at the moment, I stumbled across National Mobility Hire, which I have until April 2021; hopefully by then I will have had my assessment but that’s about the current wait time. I only wish I had found them sooner. This morning they dropped my electric wheelchair off and it’s as if they gave me the key to life back.

As soon as Damon had got home from work we set off out with the kids to test drive the chair. It was a complete and utter dream, to be in control was empowering and so uplifting. It gave me such a boost. Since loosing the use of my leg I’ve been unable to take my son to school, such a basic task every parent does and it has devastated me. We weren’t entitled to help from the council as he’s not compulsory school age, my partners hours change every other week so he couldn’t take him, and Covid-19 has limited our options for help as we live in a Tier 3 area. Honestly with each week that was going past it was harder to figure out; this chair completely changes that, it enables me to get him there and back again. Knowing I can do this myself again brought me so much joy.

Posted in Archive, January

A Step In The Right Direction.

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Today has been a slightly better day, in comparison to the last 5 or 6. The last couple of days I have been almost unable to even hobble around the house, without one or two members of my family holding my arms, and helping me. Today however was different! My right leg still shook like mad, and my knee still over extended, but I managed to hobble around unsupported. I only managed a short distance, however I am still overjoyed by this as it is a big improvement compared to the last few days.

I am thinking about asking my Occupational Therapist for a walking stick. At 20 years old, I did not expect that I would have to consider this, however if it helps that’s what counts.. My theory is that having a walking stick will either go one of two ways. The first being that it helps me with my balance, so hobbling around the house becomes slightly easier and less dangerous. The second is that with my natural ability to fall over everything and anything, the walking stick will become yet another obstacle for me to try to avoid, yet will still fall over. However I will never know unless I try, and it is not the end of the world if it does not help. Anything is worth a shot at this point.

Tomorrow my new wheelchair is arriving! It is a self propelled one, which will give me some much wanted independence!  I am really rather excited about its arrival and cannot wait to go out in it! It will put my mind at ease as well. When ever I have someone pushing me, I have a mental freak out, I know that they are not going to deliberately through me out of the wheelchair, however I still end up muttering under my breath “stay away from the curb…watch out for the hole” over and over.

My hand also seems a lot better today, I have my fingers crossed that it stays this way. It has improved so much that I did not wear my splint today. This is really positive as I don’t like strapping my hand up, but it helps contain the spasm so I can’t complain.

I have also started to slowly increase my dose of Gabapentin, I am currently taking 1800mg a day and am hoping to get it up to 3600mg a day. As I am finding it to be a very beneficial medication my consultant thought this would be a good idea. I am doing it in steps of 100mg in case I start getting any side effects, that way I know how much my body can handle.

Overall today has been a very positive day and I am hoping that the rest of the week continues to stay positive.

 

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