Over the last couple of years my health has progressively worsened. I have a chronic neurological illness, but as I am still on my journey within the NHS, I am as yet undiagnosed.
I haven’t blogged about this journey here, but this doesn’t mean I haven’t spoken about it. I am going to write a three part series, and my hope is to explain my illness as I feel it, to inform and educate others who may not understand, and to be a voice for others who have experienced similar to me.
- The first part will be my explanation of the symptoms I have experienced – how they feel, how they affect me and how I am dealing with it.
- The second part will be about my emotional response to becoming ill and how it is very similar to the grieving process.
- The final part will be about my journey within the healthcare system, and how I plan to document this visually for an exhibition and workshop in October at the end of the year.
PART ONE – symptoms
- The first huge symptom I can really remember is when my leg(s) began to stop working properly. At first I thought this was a side affect from a new medication I was taking, but it wasn’t as described, so that was ruled out. My left leg would drag and become weak. And I found my foot would hit the pavement and I’d often trip and sometimes fall. I was unable to run, my coordination in moving was gone. I had an accident that sent me to A&E. I had tried to run across the road to catch a bus, but I fell as my left leg locked and I couldn’t bend my knee. I hadn’t suffered any serious damage and after some physiotherapy, my walking improved. My leg was still behaving strange, I was walking like I was drunk, when the rest of me was sober, and at times, I had to really concentrate on my walking. I had another accident, and consequent trip to the A&E, when my legs crumpled beneath me like a concertina and I sprained both my ankles. My sprains have healed, but my walking has never improved.
If I go out walking, I take a cane with me, it helps with balance, as my leg can be unpredictable and crumple at any point – a lesson I sadly learnt when a cocky me thought I was ok and then fell into some nettles (yes, I do laugh at that, because it is funny – even if it did really sting!). I can walk fairly normally to begin with, but my left foot soon starts to drag (this is called foot drop). This can be really tiring and after a while my leg starts to feel really weak, and because my right leg is doing more of the work, it also starts to feel weak. I tire from walking quite quickly. I’m like a newborn baby deer trying to walk for the first time! Don’t even ask me about stairs! Stairs are my nemesis.
- The second main symptom that I remember is muscle stiffness and spasms*. My left foot often curls up and cramps. It is quite painful and even though I try to think about something else, it can’t be ignored. Occasionally I have spasms (jerking involuntary movements) in my legs, and my arms (mostly on the left side) – these happen predominantly at night. As you can imagine, this can make sleep a little less rested – I wake feeling really tired, aching and my feet feel a little numb and tingly. *I have been diagnosed as having a spastic paraparetic gait.
I have to wait for my body to recover a little before I can get up – this generally makes me late for work. I used to pride myself on my timekeeping, and often got to work at least 15- 30 minutes before my shift started, so I could make a cup of tea and relax into a day of hard graft. It has taken me a long time to forgive myself for having the worst timekeeping – because nobody else is telling me off. I know I have to let my body loosen up a little before I can do anything else, and with poor sleep, waking any earlier isn’t much of an option.
- The biggest interruption to life prior to illness is fatigue. Fatigue is not feeling a little tired after a long day. Fatigue is not feeling worn out after going for a long run or a hike. Fatigue is a feeling of unbridled exhaustion that can happen after doing absolutely nothing. I don’t think it is possible to imagine fatigue until you have had it. For me, it affects me more than just a feeling of overwhelming tiredness. My limbs are weak, and even walking from the lounge to the kitchen is a trial. My hands cannot grip things properly or type things properly (I have a real love of autocorrect these days), I find myself dropping things, or not quite grasping in a very coordinated way – my left side is affected more than the right. My balance is worse, and I fall into things (lets not count the bruises I have got from being more clumsy than normal). My concentration is terrible – if I am at home, and I have the TV on, I could not tell you what the plot is. I hear but do not listen. My words come out wrong, and I feel like everything is in slow motion and I am unable to pick up the pace. I lose words. They were there. But they just disappear from my head. Sleeping doesn’t leave me feeling well rested, it leaves me feeling exhausted.
Fatigue is the biggest reason I have time off work. I am learning how to adjust to fatigue, and believe me when I say it has been the hardest one to adapt to – even with poor mobility. I have to plan my days, day by day. The spoon theory is great for explaining the concept of energy and how an ill person uses it, but my energy can disappear at any minute, without any warning. I am like a faulty petrol gauge – the needle is stuck and I don’t know if I am full or empty, so I just have to be careful and hope it doesn’t stop in the middle of something too important. I have learnt not to be afraid to ask for help – I am usually pretty independent, and this has been a really tough one for me. But asking for help isn’t giving up, or being lazy (my thoughts), it is self care and making sure I am well enough to be functional. I will do housework on a Saturday if I can, so I am rested enough by Tuesday when I am back at work. I cannot commit to anything, because I do not know how I will feel, but I don’t want people to stop inviting me – because one day I will be well enough.
- Vertigo. Nausea. Dizziness. I don’t think those need explaining. I don’t get vertigo as much I did when my symptoms first started to manifest, but it can come on suddenly and without warning. It is completely disabling. The last episode I had of vertigo only lasted for about twenty minutes, but it was incredibly unpleasant.
- The last collection of symptoms I will talk about are the altered sensations. I am finding much joy in describing these – although the joy ends there, because they can be painful, aching, and downright irritating.
The medical term for these altered sensations are Paraesthesia which are the annoying and unusual feelings. And Dysaesthesia, which are more intense and painful feelings. Allodynia is where something, like a light touch, can feel painful even though it shouldn’t.
The easiest one to describe is the burning sensation on the top left of my back. It feels like my skin is on fire. It’s not quite like the burning feeling you get from muscle pain, it doesn’t feel as tight. I can’t escape this one, and I feel it possibly 75% of the time. I have ordered a cooling scarf, and I am really hoping this will ease the sensation.
You know when you put the paper Christmas cracker crown on your head at Christmas? And it feels a bit weird, because it’s just not the right fit and is a little uncomfortable, but you wear throughout dinner all the same, and when you take it off you can still feel it a little for a few minutes after? That’s how my head feels quite often, and I haven’t even been wearing a hat.
In my left arm, mostly on my shoulder and around the top of my arm, it itches. There is nothing there. I scratch the itch, but it doesn’t help. I have actually scratched so much before, that the nothing there becomes something, and is quite sore.
The next sensations appear in my left leg, and let me tell you, my left leg has got its own thing going on. Not content with making me walk like a drunk person, it also likes to keep my mind occupied trying to explain what on earth it feels like! Ok are you ready? It has felt like a Mexican wave of electricity passing through my skin. Pins and needles, and tingling, quite often numb in the morning. Like it is freezing, and also like it is distant – the rest of me feels fine, and my leg is somewhere else feeling very chilly. Like the feeling of popping candy on your tongue, but all over and under and elsewhere on my skin. Like my thigh is vibrating. Like insects are crawling over my leg, ants on a route march to their nest.
I haven’t learnt to deal with these sensations yet, and at the moment, I am consoled by finding ways to describe them with the most poetic words I can.
The next part of this blog looks at my emotional response to becoming ill and how it is very similar to the grieving process.