My Chronic Companions

As most of you already know, I’m passionate about raising awareness of various disabilities, illnesses, etc. Not just my own disabilities, but others too; creating a platform for others to share with us how their condition(s) affect them.

This is actually an old post from around the time I started my blog, but with a new diagnosis, and finding out the type of Ataxia I have, I wanted to update this post. This will be kind of similar to how ‘The Reality of…’ guest posts are presented, but without the ‘Learning to Adapt’ and ‘Changing As A Person’ sections. This will solely be based on the common symptoms, and how each condition affects me.

Let’s start from my first diagnosis…

Depression (Diagnosed in September 2008)

After a long spell of being bullied, being ill and events going on at home, I broke down in tears when I saw a GP, after a very long discussion, who diagnosed me with Depression.

The symptoms before and after diagnosis were:

  • Persistent low mood
  • Very emotional
  • Thoughts of self-harm
  • Suicide ideation
  • Loss of appetite
  • Loss of interest in regular activities and hobbies.
  • Difficulty getting to sleep and staying asleep.

At the time, I was prescribed Fluoxetine to help lift my mood, but I could never last more than 2 weeks on the medicine as one of the side effects was feeling sick. I had (and still have) emetophobia, which means a fear of being sick. Over the next 7 years, I was on and off the medication to see if I could manage the side effects, unfortunately I just couldn’t.

I did have counselling from the age of 13 up until 16. It did help having someone to talk to, who wouldn’t judge me. I had 4 different counsellors throughout the 3 years, due to moving to a different area, they were all brilliant.

I’ve not taken any anti-depressants since as I reached a point where I had taken control and removed all the bad things in my life. Especially toxic people, I finally shut some people out of my life that I should have done many years ago. To this day, and taking into consideration what I’ve been through the last few years, I still have bouts of Depression.

I’m grateful that I have Ewan and a few good friends that I can talk to about how I’m feeling.

Raynaud’s Disease (Diagnosed in March 2011)

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

The symptoms mentioned above, presented themselves in November 2009. My feet were in agonising pain; I had trouble walking, and it kept me awake for nights on end. A heat pad was underneath my feet nearly all the time. Extra layers of socks didn’t work for me either. When I first went to a GP about my symptoms, they said it was Frostbite. But the symptoms persisted for months. Due to certain circumstances, I was unable to see a GP again until I moved to a different area.

The new GP was quite ignorant at first, but after seeking several opinions from different GP’s, I was finally referred to a rheumatologist and was diagnosed with Raynaud’s Disease on my second visit.

Years ago, I did receive Iloprost treatment. Iloprost is a drug that is administrated by IV. The drug pumps through the arteries, widening them to their normal size. 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 Iloprost can cause low blood pressure, so I had to be monitored every 30 minutes.

I still experience these symptoms, which now also affect my fingers, nose and ears. However, my new rheumatologist did not want me to receive this treatment anymore, I will argue the fact that Iloprost DID have a significant improvement to ease the symptoms. I am hoping to consult a new rheumatologist in the near future.

Vitamin B12 Deficiency (Diagnosed in 2014)

My diet has never been the greatest, so it wasn’t a total shock when blood tests revealed my B12 levels were low. For as long as I could remember, I was constantly tired, no matter how much I slept. I thought it could be down to my working hours at the time, as I had not long started a cleaning job alongside my job as a cashier. However, I thought it was best to see my GP and get checked over.

I was suggested to try Feroglobin, a vitamin supplement (liquid form as I could not swallow tablets at the time), but it didn’t agree with my stomach. So, my GP gave up trying to find something to help. After moving to a different area, I developed new symptoms which were:

  • Extreme tiredness – I spent more time sleeping then I did awake.
  • No energy/Fatigue – Just trying to walk a few metres caused me to become tired.
  • Breathlessness – This one scared me, when I tried to go upstairs, before reaching the top I would be gasping for breath and experience pain in my chest.

These new symptoms led me to see my new GP, who sent me for another lot of blood tests and wanted to see me as soon as the results were in. Sure enough, my B12 levels were at their lowest. My GP suggested I should have B12 injections, and I would need them every 12 weeks. Initially, I had 5 injections over 7 days. After these 5 ‘starter’ injections, I felt like I had been given a new lease of life! I felt the best I had ever been!

To this day, I still have the injections every 12 weeks.

Anxiety (Diagnosed in March 2015)

Over the years, I’ve been abused, physically, mentally, emotionally and sexually. I tried to keep everything together, but eventually I just broke. I suffered severe panic attacks, social anxiety. I couldn’t handle being on my own at all. It was one of the worst phases I’ve ever experienced. When it started to affect my work, Mum came with me to see my GP and I was prescribed Sertraline.

I started on 50mg, and it did help with my anxiety, but after moving to a different area, it hit a new peak and my new GP upped my dose to 100mg. But, since August 2017, I’ve stayed on 150mg because I couldn’t cope with how my health had deteriorated so quickly.

Thankfully, I very rarely have panic attacks now, if I can feel the start of one, then I do everything to regain control and not let it take over. I’ve only managed to do this by being mentally strong, which isn’t easy at all, I still have my bad days but I like to think I’m in control of it now.

Hearing Loss (Diagnosed in 2017)

I started to lose my hearing at the end of 2016. It happened just after I had been unwell with a cold. I didn’t notice anything until Mum kept shouting at me (I later realised she had to shout for me to be able to hear her). I saw my GP and she said it could be from the cold I had, and prescribed me some nasal spray. After 2 weeks of using the spray, I went back because my hearing had worsened. Yet, she still said it was because of the cold.

After a month of hearing loss, I went back to my GP again and, finally, she referred me to an ENT (Ear, Nose and Throat consultant). Side note: I didn’t receive this appointment until July, which by this time, I had been partially sighted and had been having balance issues for 3-4 months. I’d also had a suspected mini-stroke (TIA) which led to an MRI. Thankfully, it didn’t show anything. But my new neurologist got the ball rolling for me to see an ENT consultant as soon as possible.

After countless hearing tests, I was diagnosed with Bilateral Hearing Loss. They tried hearing aids, unfortunately they haven’t worked for me. I’m still waiting to be seen by a specialist at Addenbrooke’s as my audiologist admitted that my local hospital has done all they can.

Some areas of my hearing do work, but the rest don’t. It’s confusing. I can hear loud noises, but if I’m surrounded by a group of people, then I haven’t got a clue what they are saying. I can’t hear music, which still upsets me. So I’m able to hear someone speak, they need to look directly at me, speak slowly and very clearly (not patronising and no mumbling). Ideally, underneath light so I can see them more clearly.

I try to use the ‘Speech to Text’ feature on my phone, so it’s easier when new people meet me, but I often come up against ignorance… which is so frustrating!

Optic Neuropathy (Diagnosed in November 2017)

In March 2017, I lost my central vision in my right eye overnight. I had a white blurry spot in the centre of my vision, and it was bloody scary to try and navigate, and not bump into anything. Throughout the same day, a white blurry spot appeared in my right eye too. This is when it worried me and I was convinced something was really wrong. After various sight tests, and referrals to optometrists and ophthalmologists, in-depth tests at Moorfield’s Eye Hospital, in London, revealed I have Optic Neuropathy.

Optic Neuropathy, aka Central Vision Loss, is where my optic nerve is very pale and damaged. Unfortunately, due to the extent of the damage, means it cannot be reversed. I cannot see facial features unless someone is right in front of me. I can no longer watch films at a normal speed as I cannot keep up and it causes me to have a migraine. Despite this, I have very good peripheral (side) vision.

If I read or look at something, to another person it may appear that I’m looking above where I want to look, but I have to move my centre of vision up so that I can see clearly with my peripheral vision. When I’m using my tablet or my phone, I’ve used the accessibility features to make the font much bigger.

Transverse Myelitis (Diagnosed in February 2018/Wasn’t told until May 2018)

Transverse Myelitis is a rare neurological condition which affects the spinal cord. The spinal cord becomes inflamed and the myelin sheath (fatty tissue) which surrounds the spinal cord, is damaged. Depending on the severity and area where the inflammation has taken 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. For a short period, I lost the ability to control my bladder and bowels.

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 night time, 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:

  • Altered sensations – it feels like I’m constantly wearing rubber gloves and it’s like I can feel the insides of my fingers.
  • Muscle weakness – I can have good days and bad days with this, some days it’s difficult to brush my hair or put a t-shirt on.

Intensive physiotherapy has helped substantially with regaining mobility, albeit not perfect, but I’m immensely grateful for the mobility I do have.

Severe Nerve Damage (Diagnosed in February 2018)

This came as a no surprise. I’ve had tingling sensations in my feet and lower legs since 2009. All day, every day, its constant. I’ve had tingling in my hands since the onset of Transverse Myelitis. Every part of my body is extremely sensitive to touch. It’s safe to say that I have a dysfunctional body.

Sensory Ataxia (Diagnosed with Ataxia in February 2018/Diagnosed with Sensory Ataxia in April 2019)

It came to light that the balance issues where the onset symptoms of Ataxia, so from March 2017 this started. As the months went on, I experienced the following symptoms:

  • Co-ordination – It just went to shit basically. If I was holding a drink, and I looked away, I would spill my drink without realising my hand had moved. I lost the ability to type.
  • Grip – I lost full use of my grip, I couldn’t even hold toilet paper to clean myself. I lost the ability to write as I could no longer hold pens. Standard cutlery was too painful to grip.
  • Muscle Weakness – my legs aren’t strong enough for me to walk, or transfer, unaided.
  • Speech – this did affect my speech for a short period of time, I would change pitches without realising, and occasionally slur.
  • Mobility – I lost count the amount of times that I nearly fell into the road because of my balance, it was because of this I knew it was best, and safer, to use a wheelchair. I couldn’t walk at a normal pace, I would stomp/plod. I did have 2 falls before my hospital admission in 2018.

It was Moorfield’s that referred me to the National Hospital for Neurology and Neurosurgery, in London, as they wanted to find out what had caused the damage to my optic nerve. It was during my stay at the hospital, and underwent numerous tests, that I received the diagnosis of Ataxia, and severe nerve damage. The neurologist I saw at the hospital did say I would need to have more tests to find out which type of Ataxia I have. But I never heard from him again.

So, when I saw my regular neurologist at King’s Lynn, I asked him outright. He was baffled as to why I wasn’t told, but he’s certain that I have Sensory Ataxia. Which means that if I’m not looking at the limb I’m using, then I have no idea where that limb is. For example, if I’m brushing my hair, once my hand has gone out of my sight, I can’t tell where my hand is. Like with my feet, I have to look at my feet while I’m walking, otherwise I wouldn’t know if my feet were on the ground.

Intensive physiotherapy and occupational therapy have improved my balance, my co-ordination, built my strength back up to a point where I can bare weight on my feet and walk, either with a walking frame or the support of 2 people. My grip is so much better than what it was. I can write (albeit slowly), type, cut up my food, brush my hair and a few other things.

Unfortunately, Ataxia is commonly seen as ‘walking like a drunk’, and it’s not, it’s a rare neurological condition.

Mitochondrial Disease (Diagnosed November 2019)

Mitochondrial Disease is an umbrella term of disorders that are caused by mutations in the mitochondria, in our cells and/or organs, leading to them not functioning properly. As it is such a complex and rare disease, numerous symptoms present themselves which often leads to misdiagnosis as the symptoms appear the same as another condition.

It can be the underlying cause of other conditions, like Ataxia. My specialist thinks that it is the cause of my hearing loss, my vision impairment, Ataxia, and possibly Raynaud’s.

A muscle biopsy I had in March 2018, and I’m not sure why I had to wait over a year and a half to find out the results, the biochemistry confirmed I have Mitochondrial. They are not sure if I had the disease from birth, or from the onset of Raynaud’s or any of my other conditions.

I am on 3 different medications, to hopefully slow down any progression of the disease.

I still need to have more tests done to find out which type I have, so I will update this when I find out any more information.

Overall, I take 23 tablets a day and 1 liquid medication 4 times a day… I’m quite impressed considering I couldn’t take 1 years ago!

So, yeah. In a nutshell… I’m a rare mutant!

Posted by

Hey fellow superheroes! I'm Ami, I'm 24 and I live in Norfolk, UK. On my blog, UndercoverSuperhero, I openly talk about my recovery journey which stemmed from being in hospital and a specialist neurological rehabilitation centre for 9 months. I talk about how I maintain a positive mindset whilst coming to terms with my disability. I love superheroes, so much so that my partner and I are having a superhero themed wedding! I generally like to talk about anything and everything on my blog, I also have an ongoing series called "The Reality of..." which allows readers and bloggers to raise awareness of the disabilities, mental illnesses, chronic illnesses, impairments, that they live with as it is so important to raise awareness! Everybody has a voice! 💚

14 thoughts on “My Chronic Companions

  1. Just re-reading as you re-shared and my gosh to do you deal with so, so much. A few things similar to me, like with Raynaud’s and anxiety. I was never offered anything with Raynaud’s (nor erythromelelgia) as though there were no options at all. I hadn’t come across Iloprost treatment until your blog. Since you posted this, have you had any further treatment with a new rheumie, Iloprost or otherwise?
    Caz xx

    Liked by 1 person

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