Chronic Illness – Part two

Chronic Illness, Diary, Mental Health

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.

This is the second blog of a three part series about my journey with chronic illness.

PART TWO – emotional response

The progress of chronic illness, for me, has been much like the grieving process. Looking back on how I have dealt with this, I feel I have fallen into griefs trap. I am going through a massive change, and I have lost my once fairly active life. I believe I am nearing the final stages of grief, but like all human emotions, things aren’t predictable and a straight line.

What follows is an over simplification of my journey, for the purpose of this blog*.


The five stages of grieving were written by a Swiss-American psychiatrist called Elisabeth Kübler-Ross in 1969. Kübler-Ross herself, has stated that the stages are not a linear and predictable in progression, as was initially written. They are a collation of common experiences that can appear in any order, or not at all. [The headers I have used here vary slightly from the original used by Kübler-Ross]

I’ll be ok and it will pass.’ DENIAL – When I first became ill, I hadn’t contemplated that it was something that would become long lasting. I’d get the odd symptom, and I hadn’t considered going to the doctors to discuss them, I thought that they would just pass. My legs for example. I didn’t think that the foot dragging and inability to run without falling would be ongoing. I was planning on getting a bike and that would make me stronger. I kept making plans, I’m not ill. I am just not fit enough. I need to do more exercise. That’s all that’s wrong with my legs. My muscles aren’t strong enough. It took me two trips to A&E and over six months to finally go to the doctor to tell them something wasn’t right.

‘Why am I no longer considered? Am I not good enough?’ ANGER – Oh the frustration. That word is the all-encompassing emotion! I have experienced so much frustration in the last year. It leads to jealously. Jealous of people who are doing the things I should be doing. It leads to blame. People are taking the things I should be doing. It leads to feeling left out. Why aren’t they asking me anymore. That anger and frustration was overwhelming. It seeped through the very core of me. I’d post angry statuses on Facebook. I’d have internal tantrums that would sometimes wash out into public. Why is this happening to me?! Why are people not caring about me?! Why can’t I do the things I once could?!
There was something I had not initially noticed, whilst I was enduring these emotions; the affect my illness was having on my ability to carry out these tasks. I was not accepting it was my illness that had taken away my ability to perform. It had not taken away my desire to create, my talent, my ideas; I was just not capable of physically doing the things I was angry about losing.

‘I keep cancelling plans, I’m a bad person.GUILT – As a consequence of my frustration, some people had seen through my anger and began to offer me work. But my desire is not enough to sustain action. My freelance work was drying up, and any offers I was given, I began to realise that I was simply not capable of following through. I felt immense guilt to keep cancelling on people, and the worry that I was becoming incredibly unreliable. I work part time for a charity, which I love. I enjoy my work. However, over the last year I have taken so much sick leave, that the feeling of guilt is constant. I want to be in work, and as much as I am unable to perform when I am sick, I still feel like I am lying to my colleagues, that they won’t believe me, that I am away from work because I am lazy. I believe at this point I was equating ‘not doing’ as lazy. Not being productive was wasting time when I should be working hard. As someone who was very active in doing, it was difficult to remove that self-criticism of how I was spending my time. Relaxing is feeling guilty.
These feelings also extend to my social life, it was my guilt at being a bad friend; cancelling on my friends at short notice, being invited to events but never going, not going to exhibition openings, failing to go on trips I have organised.

‘It’s not because I want to be home on my own’. REFLECTION & LONELINESS – There comes a point where I began to understand what was happening, but in this process, I have lost friends, I have lost the ability to do the things I love.
Being ill can make you feel very lonely, because you become a liability. You cancel plans often, you aren’t very useful on long walks, slowing things down and requiring considerations when you go somewhere. You can’t go out drinking in the evenings because you’re tired before you’ve even left the house.
It seems such an obvious thing to say, but I like socialising, there are not many people who don’t. I like hanging out with my friends in beer gardens, and drinking beer, and going to gigs, and dancing, and going to the countryside, and walking. I miss those things.
From my experience, I have discovered that chronic illness fundamentally reduces the number of friends you have. I rely on visits to my house, or to the immediate area that I live. Having visitors and seeing people is the highlight of my day. Even if I think I am too tired to be good company, a cheerful smile can fill me with sufficient energy boosts from the comfort of my sofa.
The people around me have begun to accept that I am ill. I may get asked how I am, and if I’m answering truthfully, it puts people in a position where they may be unable to respond, or try to compare with their own situations and anecdotes**, to make me feel better; if I answer, ‘I’m ok’, people may think that my illness can’t be that bad, and I must be exaggerating. So, I have a request, if you ask how I am and I answer honestly, a good response would be, ‘I hear you, that sounds difficult, I’m going to try my best today to help you feel a little better,’ and then offer to help – even making a cup of tea is helpful, I’m a sucker for a cup of tea, oh and doughnuts. If you’ve asked me via a message, then a good response could be, ‘that sounds difficult, but I’m listening, get it off your chest and then we can talk about all the positive things you are also doing’. This isn’t prescriptive, a person who is ill is not to undergo troubleshooting like a machine – empathy and humour are my two favourite things; find out about my illness***, but above all make me smile. It is difficult if you’ve never experienced something to know how to behave or what to say, I’ve been in the same position before. But remember this! If you’re a friend, you’re not here to save me (I have doctors for that), and I don’t expect that from you, you’re here because we enjoy hanging out, I may need a little extra help than I did before, but my sense of humour hasn’t dampened – I’m just not as wild as I once was.

‘I am going to learn about my illness. I shall find a way to move on. I will learn to adapt. This is how my outlook shall advance.’ ACCEPTANCE & HOPE – I have become somewhat calmer, I’m learning to live with the huge changes in my life, and I’m finding functional solutions to problems. I do not yet know my diagnosis. But little solutions help. I’m preparing for summer. The heat is uncomfortable. Putting comfort before style is not something I would have ever contemplated with every purchase I made, but if it means improving a life with illness, then I will pick the cane regardless of looking older than my years, I will pick the odd-looking neck scarf if it cools my back. I do think there are improvements that could be made in the world of looking stylish whilst ill, we are after all still human, with the desire to look great at all times, but that’s for another blog. I’ve even learnt that relaxing isn’t doing nothing! Relaxing is letting my body recuperate. I’ve learnt asking for help isn’t giving up or being lazy. I have hope because I am getting closer to my diagnosis, and the closer I get brings me hope of treatment, of managing and coping better, of being able to have a new social life. I accept that this illness may well affect me for the rest of my life. It may get worse as I age. But I will learn to live with how I am now. I am lucky I had a very active life I can mourn, I got to experience much, and those are still my memories. I will have new memories, and they will not all be about illness. Of course it is easy to say I shall now always think positive, however, I am under no illusion that I may never fall under the feelings of anger, frustration, guilt, loneliness again. I just know that I have my journey and I must travel it no matter what roadblocks life gives me.

* NB: If you are reading this, and you also have a chronic illness, please don’t feel you are doing things wrong, this is my journey, and everyone is different. I have written this as an overview rather than as a day to day account. No journey is this simplified, and we do not pass from one stage to another, like A-B.

** Situations and anecdotes are ok if you are also suffering a chronic illness, there is comfort in solidarity with others who understand.

*** Find out about an illness a close friend or family member has, try to understand what they are going through, you may find better ways to support the person.
However, from my personal perspective (and I know many people who also say this), please do not try to give unsolicited medical advice, or tell me that a person you know with the same symptoms did things differently and was ok and I should be too. I understand this may come from a place of well meaning, but unintentionally it often feels like you’re judging me, or not trusting me when I say how I feel. I have doctors for the medical stuff, and don’t for a second believe I haven’t tried that thing I’ve already read and researched about.

Chronic Illness – Part one

Chronic Illness, Diary, Mental Health

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.

  1. 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.
  2. The second part will be about my emotional response to becoming ill and how it is very similar to the grieving process.
  3. 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.