Sometimes the reason chronically ill people retreat inward, is to hide all the positive things happening to others, so that they don’t feel overwhelmed by the negativity that incurs from within them:
Frustration at no longer being able to do those things
Anger that peers gain more experience and you do not
Jealously and resentment that you aren’t thought of for those things
Sadness that their life is bubbling with excitement and activity whilst yours is stagnant and dull
Fear that you will never be seen as relevant or worthy ever again
I still get those emotions. But I have enough resilience to not let them become the sole occupants within me. I’ve had to become ever more self aware, and as such it’s tiring on another level, as I navigate life analysing and quantifying my reactions to situations and the people who are making decisions around me.
You know what, there are times when self-pity exists in abundance, but I wonder, who wouldn’t experience it when faced with similar obstacles in their path to self-realisation. Our resilience has to become stronger as we face necessary rejection and more difficult hurdles to navigate. Constantly changing goal posts, constantly changing journeys, constantly facing hostile situations. It is tiring, and I’d rather that I didn’t have to.
But every time I witness friends and colleagues continue on journeys that flourish and seemingly avoid the obstacles I have faced, I must remind myself to be genuinely happy for their victories, to experience my 5 negative emotions for sure, but to allow positive emotions to dance with difficult partners and give them encouragement and find a different meaning from within. Your journey is no longer parallel with mine, and I do miss it, but with any grief I have to learn to put it away in a box. A box that I label accordingly – a memory I can return to with fondness; an event I do not want to experience again; a time that has given me insight and shaped who I have become.
I need to have faith in myself, and that my worth has not been vanquished by a permanent illness, it has merely been displaced. Imagine if you will a worth as a beetle, important and with clear direction, but a falling rock narrowly missed the beetle. It scuttles away just in time, but sadly the worth it was adhering too is no longer there, but it hasn’t lost it forever, where it stands now, a whole new purpose and meaning is offered. The beetle can look at that rock and feel angry at its destruction of the path it was on, the blackness engulfing its sights. Or it can look to where it is now and bask in the new opportunities open to it. Beetle don’t feel bleak, your journey is still worthy, it’s just taking a detour and possibly a brand new direction.
13th-19th May 2019 is mental health week – the theme is body image, my body has been shaped by age, illness and disability. When I look in the mirror I see a different person to who I was – I compare myself to myself, but as a beetle I am on a different path now, my body carries me, it continues to work despite the lesions, it’s finding ways to preserve my life, I can’t fault it for that. I guess I now see my body much differently than I did before – I don’t want or need your judgement and demands, now it is mine to champion.
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.
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.
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.
It’s been almost a year since we last ventured into the Yorkshire countryside as Leeds Photography Excursions. In that year my health has deteriorated, causing me to have fatigue and reduced mobility (as just two of the symptoms), it has been both an interesting and frustrating year. Itchy feet wanted to take me away from Leeds and to explore another part of Yorkshire. The original destination was set to be Aysgarth, to find the waterfalls, but Storm Brian put a literal damper on that, so I called up my friend, who lives on a farm on the border of East Riding of Yorkshire and North Yorkshire, and we were all set to visit. We drove to Painsthorpe, and took to the country lanes to walk towards Thixendale, a tiny village and part of the Yorkshire Wolds. We visited the Robert Fuller Gallery on route, where I bought some lovely illustrated prints of the local wildlife. We finished our walk at the Thixendale Village Hall, for a cup of tea and slice of cake – although, I went off script and had a rather delicious red pepper and herb homemade bread. Normally I would’ve been all fired up ready to walk back, but by that point, I was really struggling, and the concrete boot I normally drag around with me had been lined with lead. We had the luxury of being picked up by my friends husband! It was a frustrating walk, and I hurt the following day, but I have missed the countryside, and the pain was worth it.
With illness, and the change in my walking, my movement has slowed. When I walk for a distance I am pained, every step becomes a struggle, it aches my back, my gait has changed as I move forward, swaying, dragging my foot, my legs working harder as I lift them higher. I am behind everyone, as they speed along chatting.
There are stories with every walk, Stop! wait for me, I am walking slower now. The wind, my dog doesn’t like the cold wind, he’s little and the freshness of the Yorkshire countryside is harsh.
The stories we tell as we walk. We remember the last time we were together, we remember things we have done since, we talk about places we haven’t been, and where we would like to go, we find out about the histories, look at the land, and learn about the neighbours, two miles away.
What’s in the picture? What was the feeling? What were the sounds, the noises that permeate the air? What were the smells?
With limited movement, I still find so much pleasure in being out walking, and slowing down, I have found my senses are heightened, I notice more. So although illness has kept me almost still, slowing down does not make me enjoy things less. My walking is my art, and this is something I really want to explore much more.
Do we see the same?
the same roads, the same horizons, the same skies, the same grass growing in fields, the same sheep, the same pheasants, the same fences, the same trees
On Saturday 7th October, I led a walk as part of the Love Arts Festival 2017 programme.
The ‘Art, Access and Urban Walking’ grew out of the walk I led as part of Jane’s Walk Leeds in May. The idea was to create conversation around accessibility in urban and green spaces, and document it in a creative way through photography, writing, sketching, or spoken word. There were so many snippets of conversation I wish I had recorded, about the spaces we occupy, how we neglect visiting areas outside our neighbourhood; and once we hit the shopping park, conversation moved towards accessibility in public spaces.
As I have written about before, I have a neurological illness, which has effected my mobility, and also my energy levels, as well as causing me great pain at times. On the day of the walk, I felt very disabled by my inability to network and talk about what I am doing and thus spread the word (I had not been able to get to any of the other events during the festival). This caused me to drop into a low mood and feel anxious about the walk. Part of my journey with a chronic lifelong illness, is looking at accessibility, and being able to take part in activities. This is more than just mobility and having access into a place, I need to consider my energy levels, restricting how far I can travel, and how long I can stay. Social isolation brought on by an illness can definitely have an impact on mental health, so leading this walk, it was important to me to highlight this.
Map of the intended journey, note that it would take an average person just over 20 minutes to walk it without stopping
We met at the Gatehouse Cafe adjacent to the Abbey House Museum. I noticed there is not signage out the front of the cafe, so it was not immediately obvious where it was.
I had done research about the community in Kirkstall as well as looking at the route we were taking and questions that might arise. We discussed the extra steps that wheelchair users and those with reduced mobility have to take to enter older buildings, an impairment disabled by design. We acknowledged that it isn’t always practical to make the environment flat and even, especially in a hilly city such as Leeds, but in doing so, we have to also acknowledge the extra work that those with physical impairments have to take to travel places. However, some pavements are rather questionable.
I explained to the group that since becoming ill, my pace had slowed considerably, I have to stop frequently to rest. My journey around the Kirkstall Parklands, has led me to discover details in the landscape that I hadn’t noticed or paid attention to before, as I rushed by. Walking my dog has given me the impetus to continue moving and exploring, regardless of becoming restricted in my location. I have begun without intention, to collect images. I documented spring fastidiously, learning the names of all the flowers in the process. Once flowering had died back, my focus moved to the environment itself, natures typologies.
I have begun seeing more.
Bark, the differing cloak of each tree, the marks scored deep, choked by ivy, the amputated branches leaving behind eyes, parasitic plants anchored to the ridges.
Inspired by the Becher’s Typologies, my collection of observations uncover the journeys I take, the paths I frequently walk, and the flux in which nature exists. This is a work in progress, and I will update in a future blog.
Our conversation moved to access in our local green spaces. There was a fascinating discussion about plants, the way in which they grow and survive. One of our members was fantastic at naming the trees and offering green fingered wisdom passed down from her grandfather. We talked about rest points, access to toilets, the incline of a path, the way in which the practicalities of accessibility may impact on the countryside and parks. We are rich with the green space the city of Leeds and its boroughs offer us, and yet we seldom investigate much past our own neighbourhood. I mentioned the wonderful Middleton Woods, an ancient woodland in south Leeds, best viewed when the carpet of bluebells are announcing spring. But there was surprise from members of the walk at the existence of Middleton Railway which is the world’s oldest continuously working public railway, founded in 1758.
I created a list of community hubs, local sports, places of worship, events, volunteering etc in Kirkstall with the help of my local councillor Lucinda Yeadon, and a prominent member of the Kirkstall community. It ended up being over a side of A4 in length, and I don’t think it is even complete. This research was to find out more about our neighbourhoods, and to find pride in the places we live. Lucinda tells me that if we asked any other councillor about their ward, they would hopefully be just as helpful! If you are interested in finding out more about your area, you can find your local councillor here. I am sure a quick google to find your representative outside of Leeds, should reveal the answer.
We reached the shopping park and conversation turned back to accessibility and how it can be applied. Amongst the group was an architect, and a PhD student who is studying at the Centre for Disability Studies at University of Leeds, his PhD has a working title ‘Personal Assistance: The Challenge of Autonomy‘. It is interesting to hear views from other people around the topic of accessibility, so it was really exciting to have someone who spends their time really researching the subject. Modern architectural design is considerate of the challenges that people with physical impairments have, but often the building itself is not enough to really address the societal barriers which people with impairments face. We discussed how the term ‘fully accessible’ is used a lot, but in actual fact, a wheelchair ramp and an just about accessible toilet is all that is on offer. Can places truly be fully accessible? We could have a changing places toilet, but does accessibility stop with physical impairment? The interesting ‘Around the Toilet‘ arts based research project, takes us into more depth about this subject. Of course, toilets are not the only barrier to accessibility. Sensory impairments, are often an after thought, if thought about at all. The lights we use, the sound, the layout, the signage, the colours, the crowds of people, the service, the knowledge… Visual impairments, autism, hearing impairments, all of which can be disabling to a person if environments do not acknowledge their existences.
Accessibility is a broad word, and looking past how to get into a place, we need to consider those who are left outside because of reasons that haven’t been considered. If we are truly to make something fully accessible, and our able bodies cannot think past ramps and toilets, we need to retrain ourselves on the true role of the social model of disability.
We finished two hours later, and tiredness hit me, so we stopped at the pub. An interesting conversation developed between the two companions remaining, regards to nationality and how they fit in in England. Spanish, but living in Leeds for almost 4 years, and South African and living in the UK for much longer, their views on the country and the way we behave is very insightful. There is a reserve around the English, that being outspoken and animated, takes people by surprise. But in complete contrast to this, we have no problem staking our claim as a nation that has colonial pride, and hates being invaded. Racism has risen, more so after Brexit, and the lack of integration often thrown at immigrants with spiteful vitriol, forming the cause of their mistrust. I would not want to integrate with this notion of ‘real englishness’, if this red cheeked white man was looming over me like a monster – I would feel intimidated and seek the sanctuary of people like me. Accessibility eats at the heart of everything we do in society, and if we aren’t listening and considering the views of the people that our environments are disabling, then we are not accessible at all.
Views on racism, and the nature of white supremacy within our towns, is another blog waiting to be written!
The last thing I will say about accessibility, Kirkstall Bridge Inn is a wonderful pub, but I was very disappointed to see the red emergency cord in the accessible toilet, tied up out of the reach of anyone who may need it. Is it a hindrance? Well imagine life where your daily existence is constantly met with hindrance and frustration…
I am hoping to draw in some images and thoughts from the people I walked with. So will add that at a later date.
[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 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.