Exhibition – The Story of a Lost Toy

Arts Events, Dogs, Events, Exhibition, Love Arts Leeds, Mental Health, Mickey, Theoretical, Typologies, Walking Art

click on the image above to find out more about the event

On 29th September until 13th October, I will be showing the culmination of a year of collecting tennis balls. Images of discarded and destroyed tennis balls that is!
Hosted at the Union Coffee House, we will be holding a one off special dog friendly viewing on 6th October.

Visit Eventbrite to book your ticket and bring your pet pooch (or just come to meet all the other pet pooches).

Google Maps satellite image showing the area which the photos were taken. My walks take me over the common at the top, into the Abbey House gardens, around the Abbey parkland, along the river, and through the woodlands at the bottom. 

About Union Coffee House
A unique community space and venue to hire in the heart of the city. All the furniture in the cafe is for sale, including the chairs you’ll be sitting on. Their furniture is a mixture of up-cycled/pre-loved and handmade, and they can create bespoke furniture to suit their customers. All their suppliers are local small independent businesses or social enterprises. The charity that they are currently working with is LS14 Trust in Seacroft. It is a quirky place that is quick to make you feel welcome and at home.

click on the map below for directions

This is exhibition is part of Love Arts Festival, a yearly festival held in Leeds as a celebration of mental wellbeing and the arts, click on the image below to see the full the programme.

Personal Diary: Talk about illness

Chronic Illness, Diary, Mental Health

I recorded this piece so you can hear how my thoughts sound as I write them down*.

Sometimes the silence is deafening. Nobody wants to talk about illness. Nobody wants to hear it.
That silence lives inside your head.

‘Where do I turn? How do I fix this? Why is it happening?
I read the articles. I know the science. I can recite the words as why I have the pain, the fatigue, the inability to walk like I once did. I even know, that maybe I am more prone to demoralisation and depression because of this illness, it all makes perfect sense. Of course it makes sense, I’ve read the articles, they explained it to me.

But there is something more existential about feelings, and the realities of those feelings. Science explains why, my wanting to know why is fulfilled. But it is little comfort knowing why, when I cannot control my environment, or the people who inhabit it, affecting my actions and reactions. It is little help when I simply cannot control why I feel that way.
It’s a string of events – I want to go out and have fun, maybe visit a pub and have a few drinks, or go for a long walk in the country, perhaps visit an exhibition opening, or even attend a social gathering, with people I haven’t got to know properly yet. The desire to do these things is hampered by the inability to do these things. What is stopping me?! The list begins – the chairs are uncomfortable and cause me pain; the alcohol doesn’t work well with either my medication or my illness complications; the walking is too long and too hard; the exhibition is too far away; there is nobody to come with me; it’s too hot and my symptoms are worse; I am tired, I am broke, I am anxious about travel, I am disabled.

Soon, those people I spent time with, doing activities with, fade away. My support network dwindles. ‘How much longer can we spend going to her house, it’s a total non-event.’ That’s the silence in my head. It fills in the silence with conversations I haven’t had. It fills in the space with assumptions, imagined scenarios, filling in the silence with chattering, telling me why I have slipped from memory.

Where has this loneliness come from? My days have emptied. When there is less, because ability is blighted, those empty moments, they fill that silence with a booming explosion. The realisation that there is all that empty time. Plans to do, are now plans to not do. My empty days are spent watching films, TV serials, reading, sitting with my dog. Like an endless loop of the same. This isn’t how I planned to spend my time, there was never a ‘do not’ attached.

Advice is well meaning. But advice is seldom useful. Not when you know the science and the reasons, but cannot change the facts.

“Try not to isolate yourself”, they say. “Talk to your friends and family”, they say. “If you don’t have that support, build one”. Fair enough, seems reasonable. And far be it from me to be the naysayer, but here I go:

I am not trying to isolate myself – I want to do all the things, with all the people.
I do try to talk to my friends and family – they have hit mute. How much more can they listen to me, when my answer to ‘how are you?’, is the now difficult response of ‘not great, [insert current symptom] is bothering me’. We can handle acute, but chronic? ‘Why aren’t you better yet??
Find new friends – I’d love to, but I can’t get out because I am isolated (see reasons above).

I have done what my doctor has suggested, I have learnt the science and suggested things to them myself, I have even read about the complimentary therapies that can assist, yet still this damn demyelination in my neck is mocking your advice to me. I thank you for your desire to make me that person you once loved and had fun with, I am certainly on the same page as you with that. But sometimes it is too much – it adds to my feeling of inadequacy, that I am not trying hard enough, it joins the chatter telling me you think I am lazy and just don’t want to get better, it makes me feel that I am a failure.

But! I am not a failure. I refuse to believe that not recovering from an incurable illness is my failure. My illness has created the problem, but it is not one I can fix alone.
“As much as possible, continue doing the things you like to do”, I laugh to myself. I loved walking far, exploring new places, going on trips with friends. Now I walk a short length and explore the same space day after day, rarely with friends, often just me and my dog.

‘But you are so sad, we just don’t know how to deal with that”. I hear you, it must be quite hard to see a friend so miserable and diminished.

My hierarchy of needs has changed.
Thrill seeking is currently redundant. The basic needs of health, safety and companionship are now my priorities.

Here’s something you may not know. People don’t travel through life on a linear. And that very definitely applies to me now.
Life satisfaction.

Desires: Then – holidays. Now – holidays. Difference: Then – the places I went, or wanted to go are frivolous, the only thing I had to worry about was how much money I had to spend getting there and being there. Now – is it far, is it comfortable, what’s the climate like, is there much walking, is it accessible, who will go with me, can I afford it…

Be more positive. Learn to be optimistic.

I have found plenty of models to achieve happiness and satisfaction. Here is one, with it’s catchy acronym – PERMA:

  • Positive Emotion. Feeling good, positive emotions, optimism, pleasure, and enjoyment.
  • Engagement. Fulfilling work, interesting hobbies, “flow.”
  • Relationships. Social connections, love, intimacy, emotional and physical interaction.
  • Meaning. Having a purpose, finding a meaning in life.
  • Accomplishments. Ambition, realistic goals, important achievements, pride in yourself.

Now apply that to yourself. Apply it to people with more money. Apply it to people with less money. Apply it to people with large families or friendship groups. Apply it to people with few friends or less family. Apply it to people with impairments – physical, sensory, mental. See how they differ. Think about the time, energy, ability that some people need to get to a level of life satisfaction they desire, or even on your level. Remember, sometimes, what seems simple, easy, and achievable, may be difficult, hard, and seldom achievable.

I think we need to take time to listen. I mean really listen. We can give ourselves those self-affirmations. We can tell ourselves we are complete, we are our best selves. But we also need – not just desire, but need – to hear those affirmations and to give those affirmations to those we choose to be friends with, especially when their life satisfaction, their journey has altered. Don’t let the silence become deafening when you can’t see them. Reach out, even if you have since filled the void your full friendship once held. We all need to feel valued.

I don’t want to end this here. Pining after forgotten friends. Or expecting you to feel sorry for me.
Pity is not what I want. And I wager that most people in my situation are the same.

I want this. I have very good reason to feel demoralised. I am not going to be a quick fix or return to the previous version of myself. However, I do need to find my way to continue my journey through life, and it is going to be a bumpy ride. We never know when that journey we take, will take a diversion. Let’s talk about illness, it is scarier not speaking, not listening, and that silence can be deafening.

* Today, I have felt demoralised. My illness has taken my spirit and tried to crush it. It is hard having strength, when your strength is already being used overcoming obstacles everyday. But I will attest, know this, my spirit is stronger than I will ever let my illness be.

And I left my stumbles over the words as I read them. I found it hard to read this monologue, and it was several takes before I even felt I got it right. Like me, it’s not perfect. 

Chronic Illness – Part Three

Chronic Illness, Diary, Mental Health

From GP to Diagnosis

[September 2016] – It’s been almost a year since I began to present with problems,  trouble walking, tripping and falling over, visiting A&E, and generally feeling unwell. (see part 1) I visited the Doctors to find out what could be the underlying problem, after a few routine questions, and checking my ears for infection (balance and vertigo were high on my symptoms list at the time), she sent me for blood tests.  

[October 2016] – The IT system that deals with blood analysis went down in Leeds. It took a long time to get my results back. There was no abnormalities present, I am aware I was tested for blood sugar levels and thyroid. The Doctor asked if I was feeling ok. I wasn’t. To get an appointment with the same doctor, I must wait several weeks. Funding and the NHS, is for another blog…

[November 2016] – I return to the Doctor and she decides that I should be referred to neurology. At this point, I know that something is definitely wrong, and I am sure that it is something similar to Multiple Sclerosis. Part of me worries what if I am wrong, and they don’t find anything. This feeling plagues me for some time. It is both relief and with grief to find out that I was right.

[February 2017] – After waiting some time, and my doctors chasing them up, I finally have an appointment with a Neurologist. I arrive prepared with my medical history – my perspective, and my symptoms over the last year. Making a record can prove to be really useful in these situations, as often you forget things, it is also important to include your family history of illness in this record, if you are aware of it. He carries out several neurological evaluations, and I also have my bloods taken for testing. He tells me from that examination and my history that I would need an MRI and possibly a lumbar puncture (formerly a Spinal Tap, but the fictional rock band stole the name).

[March 2017] – The MRI machine is located in a car park, in a trailer. It is quite something that an expensive piece of hospital machinery is kept in the car park, I am not sure if it travels elsewhere in the city. An MRI isn’t scary, for me anyway. I do not get too anxious about the actual procedures, more the results. I felt quite relaxed during the scan, it was a moment to have a nap. Although it is really noisy, my thinking took me back to the 1990’s and trying to place where I had heard that BPM before and on what dance track. I had scans of my brain and upper neck. Afterwards, I felt a little dizzy, but nothing untoward.  

[May 2017] – Again I had to contact my doctor to find out how long the results of my MRI, would be. The longer I am waiting the longer I am not getting better, and yes it can be quite frustrating. I finally got an appointment with my neurologist, which was quite a short visit in a hospital in the outskirts of Leeds. He told me that I definitely have lesions on my cervical spinal cord, and that this is causing my symptoms. However, he wasn’t sure if it was multiple sclerosis, and his clinical diagnosis at this stage was that it was caused by the shingles (herpes zoster varicella) I had in September 2015. They would need to investigate more, and would require a lumbar puncture.  My brain scan showed normal (which I like to joke, proves I am not crazy), but my spinal scan showed that I had lesions.

waiting room

waiting room decor

[June 2017] – So the date of my lumbar puncture arrives. It is very early in the morning, and I find it quite difficult to get myself moving in the morning. I have been feeling nauseous for the last day or so, and this causes me some anxiety as I am unsure of how I will react to the procedure. I have lots of bloods taken. And a cup of tea. The procedure goes smoothly, and I am very fortunate, as it is one of the trickier procedures to carry out. Afterwards, I feel exhausted and dizzy. I have to stay on the ward for an hour, so they can ensure there are not complications, and also so I can rest, there is also lots of tea (caffeine is useful in helping recover apparently, prescribed by the doctor! I don’t normally drink caffeine, so three cups should definitely do the trick). Once the anaesthetic has worn off, my lower back feels like someone has punched it really hard. I feel nauseous, weak, and exhausted.  

rest after the procedure

lots of tea

[June 2017]  – “Treatment is key for spinal tumours, as any damage it causes can be made more severe or indeed, permanent, if treatment is not sought soon enough.”
“If you have been diagnosed recently with a form of spinal lesion, ensure you get as much information as you can on your condition. Although initially overwhelming, with the the right care treatment alongside self-education, you will be in a better position to heal, not to mention feel empowered through your treatment.” spinalcord.com

I worry about my prognosis, as I have waited weeks between appointments, and not received a diagnosis. I visited my doctor, I have reached a point where I simply cannot cope with the neuropathic pain in my neck anymore (along with many other frustrating, painful symptoms). I sadly haven’t had much, if any, information given to me with regards to managing my symptoms from my neurologist. I have relied on web searches, and looking at medical websites when I have to google the terminology in the letters sent to me. I have used the MS Trust and MS Society for help with symptoms (even though I have not been diagnosed with MS, I have many similar symptoms and obviously the lesions on my spinal cord).

In the doctors surgery, I spoke about the pain in my neck, and how I couldn’t concentrate at work; fatigue and how I have so much time off work, but I am lucky that I have an incredibly supportive employer; drop foot and how my walking is bad and not getting any better. My doctor was incredibly sympathetic towards me, which I am grateful for, he listened to me and prescribed some medication that should help my pain (gabapentin, which is used for nerve pain, like I have – I think it is the location where sparks are flying, due to the nerve damage, I think of my nerves as like electric wires, and the coating on mine have been compromised). He also told me he would write to my neurologist, crying unexpectedly through pure frustration probably emphasised my concerns.

In the next blog, I will hopefully have news on my diagnosis.

I think our NHS is one of the best in the world, and I am grateful that I am able to find out what my illness is, but it does worry me how underfunded it is – with pay to nurses, for example, at an all time low, junior doctors facing atrocious contracts, morale is clearly something I know is affecting the staff. We have services that cannot cope, and patients that are waiting months to be seen, it runs across all departments. Central Government is chipping away at our wonderful NHS, and paving way for a private system, which the citizens of this country do not want. The NHS needs protecting.

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.