This wasn’t in the plan!!

By Hannah Royal

I was twenty-five when this ‘little’ problem came to light. I know there are those out there who suffer more and have had bigger problems with their condition but my little world shattered!

It was a normal Saturday and I was heading out with a friend for food, putting on my new heels but couldn’t fit in them… I knew they fit, I only bought them a few days ago… I was warm and in a rush so I brushed it off and just put on another pair.

The next day I had a weird warm sensation running down my leg and it felt almost heavy… again I brushed it off, I was tired!!

The next day I drove into work and found it really heavy on the brakes, and by the time I got into work I was dragging my right leg… perhaps I slept awkwardly, compressed a nerve. But as the days went on I continued to drag my leg. Getting my foot over a mat was impossible so I would drag it with me. I couldn’t drive but I continued to work. At work, I would fall, and I was tripping over my own foot. After examination, I had no sensory nerve reaction. The doctors would scrape my foot and I, of course, would yelp in pain… they were driving a sharp object into my foot but my nerves would not react.

That first week I sent my body into overdrive!! I tried to carry on as normal with work and home life, but basically carrying my body weight and my legs with it, just made me ill. Some nerves came back about a month later, but this numbness spread to my ribs and again my body was in overdrive.

MRI Time…

I had the MRI, and the doctor in A&E (accident and emergency) said he wanted to meet me for a follow-up and a referral to a neuro – this was expected. What was unexpected was the hospital sending me two letters for a neuro appointment all before the A&E specialist appointment. I rang and said there had been a mistake, they have given me two appointments for the same doctor. “Oh the second letter is specifically for the MS clinic,” the appointments coordinator said.

Brilliant, I have MS…

The specialists apologised profusely after I emailed both of their secretaries about this little mishap.

Examination time…

By the time this had happened, the initial symptoms had gone, but there was still nerve damage with the foot and I had the occasional fall, but hey.

So I don’t have MS…

It was confirmed by the neuro consultant that I did not have MS, but I did have lesions on the left frontal lobe and the right atrium, and a spinal cord lesion at T3/4. They called it CIS: Clinical Isolated Syndrome. Which is not exactly helpful, so I got on as normal.

Normal??

I was twenty-six now, a week after diagnosis, and I had to wear a splint on my ankle that was attached to my shoe to make my foot flick. The splint stopped my foot from dragging. I wore this for two years!!

Then the fun really began!

I thought, “Well it’s happened, but life goes on, make it work,” so I did. And then the pain started.

Horrific pain… I would stand in the corridor in work and think, “Do I need to walk down there?” I could not turn over in bed without screaming in pain.

The only way I could describe it to the specialists was sciatica in both legs. The pain would ‘radiate’ down my legs, and my hips felt as if I was dragging another person with me. When standing, my legs would lock and my upper body would move but my legs wouldn’t, they would follow later…

“We’ll start you on medication!” So gabapentin and amitriptyline are my new best friends, along with B12 injections every month, vitamin D3 and folic acid, and magnesium supplements to help with muscle relaxation before bed.

Yeah, that took a really long time to get people to see how much pain I was in, and it wasn’t your average everyday aches and joint pain (which shouldn’t happen anyway at my age). So I started on medication, and again fought to show the medication was not working, so it took a stupidly long time to get the right mix of meds to not ‘stop’ the pain, but make it bearable to go on with everyday life.

Changing!

During this time, I lost all confidence in myself and the specialists that I was under. Why was it so difficult for people to see how much pain I was in, did I really have to break down and cry in front of the specialists for them to see how bad I was? I was extremely emotional around this time. I was so tired!! And no one understood what tired meant. So really when I said ‘tired’ to a normal person, it would mean exhausted!! But I hide it well, which looking back was the problem. No one understood because I hid it.

I changed my ways for this ‘imposter.’ I changed the car for a car with a higher seating position. I now love the car, but I was angry. I was twenty-seven and was in agony getting out of my car; the amount of times I thought I would need to call in sick from the car park!!

I changed the bed so it was a higher bed, and I put a seat in the bathroom for when I came out of the shower. I requested to work two afternoon shifts a week because I sleep better in the morning than the night. Simple little things to make my life easier, but I’m twenty-seven – why did I need to make these changes? I’m way too young to buy a car based on a high seating position!!!!!!

Okay you have Transverse Myelitis!

Confused, in pain and angry!!

It took a long time to realise that I am allowed to be angry about what happened to me. I lost all my confidence and still, to this day, it wavers. I continue to have ‘relapses’ but don’t spout any new lesions which is good. But still, I relapse, the most recent being pain in my arms when I put weight on them or in certain positions. And what really annoys me is the bladder problem.

So the bladder problem!

Yeah, they talk about your nerves and pain, but they fail to mention it can affect your bladder. Did you know that the sensation to pass urine is purely based on nerves? Turns out mine seem to be damaged! I don’t have the normal sensation to pass urine, I only know I need to go when my bladder is full… and I get that muscle ache, the strong ‘I need to pee’ feeling. Because of this little issue, my bladder retains its fluid, and I never actually empty my bladder so it gets fuller quicker; therefore, I have frequent and urgent calls to the bathroom. Woohoo, I’m twenty-eight and have the bladder of an eighty-year-old… well, actually they probably have a better one. And to make me feel so much better I have been referred to an incontinence clinic…amazing!

Oh and don’t get me started on the random numbness, pins and needles, and the fact that my feet are freezing all the time!!

The cold really affects me. I am practically attached to my heat pad and extra thick socks no matter the weather. But I’ve worked out that if my feet are warm then I’m not in pain, so heats pads forever… I think I’ll buy shares.

My family have been amazing. They have tried their best to understand, but I know they won’t fully understand it. They understand how ‘tired’ I get and understand when I just need to be on my own to basically rest and catch up. They will do anything for me, but I always feel I am somehow letting them down and being a burden on them when I say I’m tired. But life goes on and as much as it has annoyed me to make changes, there is always someone who is worse off. I understand now that I am allowed to be angry and scream ‘why me’ but it is hard to see the future and a life without medication, and who knows what tomorrow brings. I am trying to live life, which can be difficult when I’m so tired! And I can’t live in a world where you live every day like it’s your last, I just can’t live like that. But I refuse to let this ‘imposter’ ruin me and stop me from doing the things that I want to do in life. I will walk that mountain and drag my legs along. I will have that family that I have always wanted, there must be a way around this medication.

Who knew a viral infection could spread to the spine and the brain, I only had a rash…ha…

But Transverse myelitis, out of my way!!!

Think people should hear about this?
  • Laura Arnone

    Thank YOU for sharing

  • Debbie

    WOW! I’ve read so many stories over the past almost 8 yrs since being diagnosed with TM but this one hit me especially hard. Maybe because today is an especially hard day with pain, I’m not sure. Pins and needles, constantly cold painful feet, throbbing pain down my back and legs all the time, serious bladder issues, sleepless nights, people thinking I must be doing great because I’m not crying or complaining all the time, reactions to so many medications over the years that I’m currently off all drugs and trying acupuncture, essential oils and herbs with more success than drugs but still have really rough days. Thank you for sharing! It reminds me that what I’m struggling with is REAL. Sometimes after so many years of living with TM, it’s hard to explain to those around me exactly what I’m going through.