Meet My Lifelong Companions!

I would like to talk about my disabilities and conditions: Transverse Myelitis, Ataxia, Central Visiom Loss, Deaf/Possibility of APD, Raynaud’s,possibility of Mitrochondrial, Depression and Anxiety in the hope to raise awareness, to inform those who do not know what they are, and to let others know, who are suffering the same as myself, that they are not alone.

Transverse Myelitis

Transverse Myelitis is a rare neurological condition which affects the spinal cord. The spinal cord becomes inflamed and the myelin sheath (fatty tissur) which surrounds the spinal cord, is damaged. Depending on the severity and area where the inflammation has took place, different parts of the body can be affected.

Transverse Myelitis affected the cervical (neck) and thoracic (upper torso) of my spinal cord. This caused me to lose control of all 4 limbs and moving my head. I had also lost the ability to sit up, stand or walk. 

The symptoms became apparent very quickly,  sometimes the symptoms can spread over hours, days or weeks. I remember waking up one morning with tingling in my hands spreading up my arms. By lunchtime, tingling had spread throughout my upper body. By nighttime, the one that worried me the most and urged someone to seek medical help, my head was tingling and it started to spread down my face. I thought I was having a stroke because one side of my face had dropped and I could no longer walk unless I was grabbing onto something. Other symptoms I experience are:

  • A glove-like feeling –  the best way to describe it is, does anyone remember those plastic witch fingers at Halloween? It feels like I am constantly wearing those.
  • Muscle weakness – self explanatory but I suffer with muscle weakness in my arms and legs. 

I am on medication to replace the myelin sheath. Along with this, intensive physiotherapy have been the best sources of treatment.

Ataxia

Ataxia is a neurological condition, there are different types, however my neurologist is unsure as to which type I have. The main symptoms I have are as follows:

  • Walking – putting it bluntly, I walk like I’m drunk (I have never been drunk in my life, tipsy yes but never drunk). 
  • Co-ordination – when I walk, I have to constantly look at my feet to see where they are placed. If I was to look straight ahead, I wouldn’t be able to tell where my feet were. Another example, when I brush the back of my head, I dont know where my hand is. I use specially made lycra sleeves to help this activity and I have noticed a massive improvement.
  • Balance – I cannot stand still for longer than 1 minute before I start wobbling and feel like everything is spinning..
  • Poor grip – again, self explanatory. Combined with muscle weakness, it is very difficult to pick up big objects such as cartons and bottles. It is made easier when I use both hands and hold the object close to my chest.

The best aids have been lycra support garments, due to the tightness of the garments it has enabled me to control my arms more. Intensive physiotherapy has made a dramatic improvement in my posture and my mobility. Along with occupational therapy, this has made a substantial improvement in finding ways to overcome hurdles with gripping items, eating and drinking, washing and dressing.

Central Vision Loss

Well, the correct term is Optic Atrophy/Neuropathy. The tssue connected to my optic nerve is severely damaged, to the point of no reverse. The exact cause is still unknown. 

I still have my peripheral vision (side vision). When I look at something, for instance when writing my post, I have to look at the screen, move my eyes up and read with my peripheral vision. Otherwise it is just a white blob if I look straight at it.

Very large print improves my ability to read. I have changed the settings on my tablet so that text, icons, etc are in the largest font possible.

Hearing Difficukties

Okay, another that is self explanatory however it is becoming more complex.

Audiologists have discovered that some areas of my hearing are better than the others. I have tried 2 different hearing aids yet both came to no avail. I have also tried amplifiers and still, no improvement.

It was only a couple of months ago I was looking on Pinterest at life quotes (as you do) and came across an advert for APD (Auditory Provessing Disorder). When I finished reading the advert, I started to question if I was actually deaf because the symptoms of APD were exactly what I have been experiencing.

The symptoms I experience are:

  • I can hear some words but words like, might and bite I have difficulty with. Words with similar sounds.
  • Combined with my central vision loss, this makes lip-reading more difficult. However, I am hoping to begin lip-reading classes in the new year.
  • A short sentence is becoming easier to understand. Complex and long conversations are extremely difficult and I simply wont understand a word someone is saying.
  • Background noises impact my level of hearing too.

I did consult my Speech and Language Therapist about APD, she done a short assessment and along with my symptoms, there is a possibility I have APD. She could not say for certain as my central vision loss creates a barrier to lip-reading. So she advised me to try out lip-reading classes in the new year which I will do. Although, if I am still having difficulties then I have been advised to seek out further tests from audiologists.

To help me understand what others are saying, they need to speak slowly and clearly. No mumbling! Face a direction where light is on their face in order for me to understand lip movements.

I now also have a tablet which enables the ‘Speech to Text’ function. This will have a massive impact on my communication with others!

Raynaud’s

Raynaud’s disease affects the digits (fingers and toes). When in cold temperatures  the arteries in our digits became smaller/narrow causing numbness, tingling sensations, coldness and pain.

Raynaud’s started in my feet but now it sometimes affects my hands. My feet are extremely sensitive to touch, walking barefoot causes agonising pain. My feet are constantly bloody freezing! The disease worsens in winter due to the colder temperatures but by summer it has settled down, although not completely.

Years ago, I did receive Illoprost treatment. Illoprost is a drug that is administrated by IV. The drug pumps through the arteries, widening them to their normal size. Not painful…well apart from when they put a cannula in! I had to go to hospital every day, for 5 days every 6 months to have this treatment. The reason that this treatment could only be done at a hospital was because the Illoprost can cause low blood pressure, so I had to be monitored every 30 minutes.

I still experience these symptoms however my new rhuematologist did not want me to receive this treatment anymore, I will argue the fact that Illoprost DID have a significant improvement to ease the symptoms. I am hoping to consult a new rhuematologist in the near future.

Possibility of Mitrochondrial Disease

While I was in Critical Care, earlier this year, specialists wanted to find out why I have muscle weakness. They performed a muscle biopsy on my left thigh, however nothing showed up. From what I have been told, specialists were trying to find the cause of my central vision loss, hearing difficulties and Ataxia. Every single test that I have had, has not showed up anything connected to Mitrochondrial. Although, the disease can cause the 3 conditions I have mentioned in this paragraph.

I cant say much about Mitrochondrial because I really dont know much about it apart from that it is progressive. There is no cure but medication can slow down the progression. 

Depression

I was diagnosed with Depression in 2008, 10 years ago. It was a combination of 3 events that were happening. I was being bullied non-stop, my parents were constantly arguing and I was always being ill. I know others go through worse.

I did try Fluxoitine a few times however I just could not get past one of the side effects which were feeling sick; I have a phobia of being sick.

I did have counselling for 3 years, I had 5 good counsellors and at the time it did help.  I didn’t have a bad bout of depression again until this year. It would be understandable considering what has happened.

There isn’t a cure for Depression, but my ways of overcoming it are:

  • People who cause me harm/stress…block all ways of contact.
  • Do what makes ME happy, not what makes everyone else happy.
  • Stand up for myself. I have a voice, therefore I will use it!
  • Surrounding myself with true, loyal and supportive family and friends.

Anxiety

I was diagnosed with Anxiety in 2015. I dont want to go into it but I will say it was caused by problems at home.

Anxiety…I’m always debating whether it is good or bad for us. A little anxiety can be good in a way to protect us from danger. On the other hand, the symptoms of Anxiety can take a toll on our health.

I suffered severe social anxiety. I could not go into public places by myself. I was prescribed Sertraline and it has helped massively. Here is the way I overcame my anxiety in public places, all of which I done by myself.

  • I walked to the front of a store, then walked back to the car.
  • Next day, I done it again.
  • The first week, I just repeated this.
  • Second week, I walked to the top of the first aisle, focused on the products, then walked out back to the car.
  • Second week, repeating what I did above.
  • As the weeks went on, I gradually got further and further around the store.

It does take time, but with perserverance it worked! If anybody tries this method, let me know how you get on!

So yeah….in a nutshell. This is me!

2 thoughts on “Meet My Lifelong Companions!

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