THE MITOCHONDRIAL DISEASE EXPERIENCE

Processing Trauma

Matt Pinder at Laurens wedding 2018

The closest thing I have had to a diary was my MySpace blog, where I would write stories about what happened last night. I haven’t really had a lot to talk about. We can only fight what is in front of us, we don’t know how strong we are until we are forced to face it. It can be easy to look back and only see the wins but, sometimes we have to deal with the hard times to move on.

Swim or Sink

My life has been relatively drama-free, nobody close to me has died and I have never had my heart broken. Childhood was fine, my parents divorced when I was 8, that didn’t bother me. I was never the brightest but school was ok, and I enjoyed college. I’m sure I lived with depression at times but mental health wasn’t a “thing” in the early 2000’s.

Uni had its highs and lows, definitely depressive moments but they were brief so I dismissed them. Depression had entered my brain throughout my teens but there is a huge difference between thinking about suicide and following through it. I remember having intoxicated conversations with friends who said that they had attempted suicide before, my thoughts of suicide started to feel insignificant. Those thoughts have never really left, but they have never gone beyond it but it has always been linked to living with Mitochondrial Disease, anti-depressants and therapy can’t change the situation (I have tried both, my thoughts might have temporarily changed but my body didn’t).

Sometimes You Have To Suffer

One of the hardest times of my life was my last job, I was there for over 3 years, I would wake up most mornings with pain throughout my body as I knew I had another day of stress to deal with but I just got through it, even if my Mito symptoms couldn’t. I had to do it, I didn’t think I had another option, I had been unemployed before, you can’t “live” on benefits. The doctor wrote me off and I had a feeling of relief when I knew that I was escaping.

Shook Up

That job wasn’t always awful, I actually enjoyed some parts of it but the worst days were nothing compared to the time my back broke. For months I had lived with a sharp pain shooting through my leg with every step but I always live with pain (typing this hurts), then my back started to ache, it was sore, nothing major. Then I had a different sharp pain go through my back and leg, sending me to the floor. I had to live on ibuprofen to move, after resting for a couple of days I left my flat, walked across the car park and I just fell down, I was in shock, somebody helped me up, I had no strength left but I didn’t understand why I was on the fall.

This weakness and pain worsened, doctors told me to take painkillers and “stay active”, and I tried. I carefully walked to Tesco, it usually takes less than 10 minutes, it took over 30, I didn’t even need anything, I was just “staying active”.. I had a feeling of dread after arriving, that I had to get back. There was no roads to cross, I carefully walked next to a wall that I could grab, just in case I felt like I was going to fall. Then I reached an entrance of a car park, no wall to grab, the pavement dipped and I timed it just when a car wanted to go into the car park, the old gent waved for me to walk first but I just fell down. The old guy jumped out of his car and shouted over some people close by, I had no strength to stand up. After being helped up I carefully hobbled home, scared that I’d fall again, nobody was close by to help. It was terrifying but the pain was distracting me.

I had to live with this pain for 4 weeks, doctors prescribed me codeine which I needed just to get out of bed (which took about 10 minutes), I couldn’t cook or shower, I couldn’t find a comfortable position to sit/lay and it hurt to find another position.

NHS Hotel

After 4 weeks of calling the hospital/emailing my consultant to book in a MRI scan my mom finally got me a bed in hospital herself. A few hours later I was in there, determined not to leave until I had surgery, I couldn’t live with this pain any longer, even if back surgery sounded scary. That first night in hospital was weird, there’s no welcome party, nobody there to tell you what is going on (I would learn that so many patients/nurses come and go, you just have to adapt) but I felt like I was in a safe place. Nurses would wheel me to the toilet and the novelty of hospital food lasted longer than you’d expect. I actually can’t remember a lot of that first week, no memorable patients or nurses, no drama, I just waited and waited (probably 4 days, but it felt like forever) for my scan, then days for a decision on what they were going to do. It was a herniated disc, nothing unusual, but they said there were complications (they never said what, I presume it was the Mito). They told me the risks but I didn’t care, it was too painful.

I went through 2 days of being told I would have surgery, only to be cancelled as emergencies came in, that was 2 days of waiting, 2 days without food until I was told wouldn’t be having surgery on that day. After a week in hospital it finally happened, it was late afternoon, so another day without food. I was more excited to get rid of the pain than I was scared about the surgery. One minute they told me they were giving me painkillers, the next minute I woke up in a haze, asking the nurse when I was having surgery, I already had it. It would have been early evening when I arrived back to my ward as I had missed out on my evening meal, they hadn’t saved anything for me. I hadn’t eaten all day, I had surgery, I’m coming down from the drugs and the only food left was sandwiches, tasteless, uninspiring sandwiches. I was exhausted, I just wanted to sleep but the nurses were concerned, they were forcing me to drink water but I was fainting when I sat up, I guessed this was because I had barely eaten for 3 days and I had just had surgery, isn’t this normal? I was too tired to ask why nurses and doctors were fussing over me, why was I having a catheter? That wasn’t a scenario I prepared myself for.

Irresponsible Behaviour

The next morning I woke up, still coming down from the drugs and I can see several surgeons surrounding my bed, talking at me. Then asking questions, this was the moment I realised I couldn’t feel my feet, or move my legs. Is this normal? Doctors, nurses or the surgeons saw me walk into hospital, so to them this was me, I was insisting that I could usually walk, nevermind move my legs and feel my feet. The surgeons calmly walked away but they were clearly concerned as they booked me in for a scan (it took me 4 weeks to get my scan to show I needed surgery, they got me a scan within days to clear themselves, and it did clear them). That morning a hospital physio came to see me, I’m not sure why she came that morning, when I was still a mess, half awake and clearly not needing a physio ASAP, I never even saw her again but as the surgeons, doctors or nurses weren’t answering me when I asked “why can’t I move my legs?”, I said how long will it take until I can walk again, she said I might not, which is scary to hear, especially when you are coming down from drugs. Why did she come less than 24 hours after surgery? She gave me a list of exercises to do, I couldn’t move!

Day to Day

I spent 5 days in that bed, relying on the nurses and visitors for everything, there’s no dignity when you need to be lifted out of bed by a mini crane to sit in a chair. My arms were the only thing I could move but I took it day to day as I started to feel my feet again, then move my legs. That first day when I started working with physios to relearn to walk again felt like a miracle, it was literally step-by-step. After 25 years of relying on my right leg, that was now the weaker one, I had to retrain my brain, I had to tell every doctor this, they couldn’t get it.

I pushed myself, sometimes too hard, it was frustrating when a day went by and I didn’t have a physio session. I would stand by my bed for hours as I did strengthening exercises but I can remember how every fall felt, it didn’t necessarily hurt but it felt like I was taking 5 steps back. 

4 weeks after surgery I walked out of the hospital with a crutch but I was still weak, my legs are small anyway but they had halved, muscle had disappeared after laying down for over 2 months. I had to stay at my mom’s for 5 weeks while I strengthened with physio sessions at the hospital but recovering isn’t that easy, when I tried walking without the crutch at my mom’s there were falls that felt like I was regressing, and more falls when I came home.

Oh, Another Thing...

I had to learn how to take life day by day, which was difficult for a planner, everything started to feel temporary but I didn’t have time to process what happened between June and September 2022 as, in December I lost my hearing in 2 weeks. I can still remember the moment when a doctor said (wrote) that my ears work, they presumed my deafness was brain-related, that was the moment I knew that being deaf wasn’t temporary and I am still not sure if I have processed that, it is a biggie. I had shrugged it off by the time I left that hospital room in January 2023 and waited for, what next…

Life is temporary, maybe we don’t need to process it, maybe it is ok just to move on?

READ more about the experience

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