Ok there has been a delay with regard to some treatment I was expecting to have had already for my illness. I have twice tried to come away in the past few weeks, first time I was not really in the best position to leave home and the second time I was sharing a hostel room with a lady whom was extremely sick throughout the night, I decided not to go on with the trip and returned home. So third time lucky…..or was it? My bus arrived into Glasgow 20 minutes late meaning that I was two minutes late for my train… However I am quite familiar with these travelling unexpected adjustments now and instantly hit the internet and sourced a fantastic hostel costing only £14.50 and spent the entire evening at Glasgow Renfrew St Cineworld watching a few films. I am in a wonderfully clean and friendly place called The Tartan Lodge only a 5 minute drive from Glasgow city centre, I will certainly return here when I should need to. Not accessible (that I am aware of, I shall check) but accessible enough for me in this moment. The bedrooms are so clean and well set out and a complete contrast to the hostel a couple of weeks ago (to which I shall never return, both from the trauma of the poor vomiting lady and the sheer disgusting state of the venue). A wonderful mix of guests, Slovenian, Spanish, Polish, French, German, American, Canadian among others. I wonder how this way of life shall be affected when ‘Brexit’ befalls us? Perhaps it won’t and all shall continue as is, who is to know as things stand for the moment. Deeply concerning. I love listening to the acoustics of foreign languages. Most people are passing through on different journeys. Many quietly doing their own thing. Spent a brief time reading a German novel (as much as I could as I am far from fluent) I learned from a few people here tonight that it is cheaper to live here in the hostel than to pay for an apartment and sure enough when I costed everything up this was astonishingly correct. Not something I had considered before (nor will but it fascinated me)
My train leaves at 5:20am as this was the only next available option so I shall have to be up and out early, not having much time to connect with others unfortunately. However I had very little sleep last night so I am looking forward to an early night.
As I type I am tuning in and out of different conversations all of which are in essence about connecting with another, one particular man is sharing his life story and his learning, passing his perspective of life onto a younger woman. Others are sharing their days and their ideas and plans for the future. It is beautiful really.
I have met and chatted with some amazing people particularly, Lynsey from both the US and Canada, Justin from Ohio (whom played and sang to us beautifully), Camille and Alandro (think I have spelled that right please feel free to correct me) from the South of France.
( Justin from Ohio ⭐️)
Reflections on my health
I recently spoke more publicaly about my health with selected friends (not all) via facebook, I felt a real need to do so so that people were able to grasp the reality of it and I was truly overwhelmed with the vast and varied comments and love in response. I also have recently had to work hard with the hurdle of being more public with the use of my wheelchair which hasn’t been easy as I have been so independent and this involves some transition of needing the odd bit of help and my own personal inner struggle with feeling like a burden, a problem, a walking need that should be avoided (a message deeply reinforced). However I am growing to be at ease with the fact and I am also finding such kindness in unexpected places. I realised a while after my post and from the responses that perhaps it is important to speak about this illness and to share the subjective felt experience of it for there are many out there whom do not, cannot and don’t know how to verbalise their experience. There are also those that without the sharing and explaining action do not understand and whom truly wish to engage in a better way with those around them whom may be suffering from this disorder or other similar or more severe illnesses. How can we grow our hearts if we live in the dark? What I found was an amazingly kind response from people with much care and it truly made a difference to my own experience. I felt relieved to have shared and others felt better by having a better sense of how they could help, even if that meant giving me space and not asking too much from me at this time. For these very reasons I will share the vast majority of the post here but of course will edit it for the appropriateness of speaking to a wider audience with whom I do not share any personal or intimate connection. I hope in some way that by sharing this here I can help someone else out there in the world.
“Ok here goes, I had not planned on sharing this information in this way however it seems that I need to, to make life easier for others as well as myself. In these past three years since being diagnosed with Multiple Sclerosis I am changing, the damage from my relapses means that my capacity now varies… and in different ways at different times. I always want to give my best to what I do but I have to take ownership that this is sometimes to the detriment of my wellbeing (that is my responsibility to manage and is essentially what I am doing by sharing this with you). Perhaps this sharing will be helpful to you in some way, I don’t know, I am beginning to understand though that it will be helpful for me so that I can set important wellbeing boundaries and not feel guilty or that I am letting others down (which I frequently experience, a little bit my own propensity but also unintentionally caused by other peoples requests, lack of awareness and expectations of me which causes much anxiety). The following will be news to many of you, I ask that you please be mindful if you are making a response.
At some, still yet undetermined (due to an unexpected issue with funding) point in the next months I should be receiving Chemotherapy. This is a newishly approved treatment for more active and aggressive forms of Multiple Sclerosis. It is a milder dose than that of people receiving treatment for cancer as I only receive four treatments in two blocks of two rounds over a year but none the less it is as it says on the tin and is in no way a small thing. My mainly invisible illness that tends to be viewed (as I experience it from others anyway) as a static sort of disability (i.e. uses crutches or a chair form time to time for a bad legs -ish sort thing) is about to become temporarily noticeable (at the very least the hair loss) and to interfere with my day to day life. This not so clear ‘health thing’ I refer to when it gets more challenging is becoming more present and big (hopefully less so after the treatment).
Key words like chemo and hospital are pretty clear and people tend to understand that it means I am not able, temporarily, to do the things I usually do. The reality is now that I am far less able to do many things I used to do, often putting on a pair of shoes or walking even within my house is a real struggle. I fall more easily. I am finding it harder and harder to manage lifting tasks within housework (never mind the DIY and decorating that I have been so frequently at ease with), now it causes me much pain or a stumble. Of late I have been experiencing extreme spasms and stiffness, likely caused by the hot weather and exposure to the shingles/ chicken pox virus. I have had to concede and use pretty strong medications, buy an expensive specialised mattress that supports back,hip and spine pain (works a treat, best investment) a light make-up trolley to cart around my art materials which of course are a lifeline in terms of energetic expression and coping strategies, Velcro shoes (again an amazingly smart investment and pretty stylish actually) among other things. A few changes to say the least. I feel however that I need to share a bit more of the unseen stuff as this is not so understandable to those whom haven’t experienced something similar or relatable. I feel I owe it to myself to open this up and also to others whom this post would equally represent for varying reasons.
I posted my most recent selfie’s because how I look (and feel about that) is changing. My hair has been cut short and the length sent to The Little Princes Trust to make a wig for a little child with Cancer. I know there are a few out there whom can relate for various reasons. It felt important.
To look at me or converse with me, usually, many would not have a clue that I have MS. This is partly a societal issue and partly my issue. It is hard for people to respond to things they cannot see and I have a particular personality where I am resilient and cheery. I like to make the best out of a situation so soldier on and this adds to the invisibility. I’m responsible for that.
My illness is characterised by my immune system attacking itself, namely the protective covering around my nerves. It means that eventually my nerves become more and more damaged, sometimes this heals and sometimes it doesn’t. The external effect of this varies depending on the area damaged in my central nervous system (this is different for different people making MS a very individual experience), me personally the bigger damage is in my brainstem and spine. This means that everything from the neck down is affected. I have lasting visible damage like the tripping and odd walk (which gets more noticeable when my muscles become fatigued), the invisible symptoms however are fatigue, weakness, numbness, neuropathic pain, tingling and this changes in varying degrees throughout each day. When I experience fatigue it is not the same as a person generally feeling tired or not having slept properly for a while it is more similar to a burn out/ flu type of exhaustion, except there is not necessarily a noteable cause or progressive sequence of events leading up to it, sometimes I just wake up that way, it can last a day, a few days or a few months. It can be muscular ‘exhaustion’, mental ‘exhaustion’ or both. Each is different and comes with different challenges in terms of my ability level. Most of it I’m used to so barely notice but when I am fatigued I am more aware, when I catch a virus and at that time of the month my symptoms are much more pronounced (but unless its a visible physical symptom this is only known to me). The cause of all of the symptoms is the damage to the nerves, the messaging from the brain has to move through a strings of damaged areas, it takes longer. For me personally this is (known to date, may change as I have just had an MRI this week pre treatment and some recent symptoms which the neurologist felt constituted a severe but slow relapse) three areas of my spine, the particular name for the spinal damage is called Transverse Myelitis (basically means a scar that crosses both left and right sides of my central nervous system, this specific symptom/ condition is very rare and usually only happens once, I won the lottery at three times) so three areas of damaged signalling. So far this has been the main cause of my presenting symptoms, this and, twice, something called optic neuritis which is inflammation of the optic nerve causing visual problems (blindness for some, but not me). However my most recent ‘relapse/ flair up’ centred in my brain, this time my speech, memory and cognitive processing were affected. This is as shocking to me as I am sure it sounds to you. Key sentence linking words like ‘the’ ‘to’ ‘and’ were missing in my speech (this is called aphasia and could well have been brought on by the stress of the relapse), I suddenly developed a stutter (a very noticeable one), occasional slurring and prolonged gaps between each word and I couldn’t find familiar words, conversing or even texting was challenging and exhausting this is known as dysarthria and dysphasia. 20-40 percent of people with MS develop this usually when the illness is progressing.
I chose key pieces of work that are important to my heart to see through. It has been important for me to face the humanity of it and head on manage the feelings of shame, guilt and embarrassment. I understand none of those feelings are necessary but none the less that is a truth of the felt experience. I also wanted to help others to know how to be should they come across anyone else with similar challenges, I mean how else do we learn to be with each other? It is a fine balance though between presence and invisibility and hard for people whom don’t know it to grasp. I met a lot of compassion and support though and I am very grateful.
I hope that by sharing this that there can be a little bit more understanding of my reasons for saying things like “I can’t manage to do that today/ this week” and that although I am generally a robust and committed person in what I offer myself to there are often times where I am more vulnerable both physically and emotionally, where I am adjusting to physical, mental and emotional changes outwith my control. I am a sensitive being, though, do not often show when I am hurt, there is a story behind that but essentially it is about dignity and this illness is very robbing of that at times (as are many others).
As well as managing this unpredictable entity I am also a normal human being going through other typical life challenges, heart ache and the likes which I know are generally better understood and accepted by society, but this post is about putting myself in a fuller context in the hope that it raises awareness and makes room for ongoing changes and needs that I am likely to have. As much as I live as though it isn’t that big a deal, it actually is. It is not all of me but it is an important part of me that I have been trying to suppress and minimise out of fear (and actual experience) of rejection because of my illness, (the grief of that and fear that it will happen again) and grief due to the changes. Fearing being any level of a burden to others, of being undesirable, too needy, feeling it will expose me as ‘less than’ and not wanting it to take over my identity in my interpersonal relationships with family, friends and colleagues and I need to stop doing that and accept it just for what it is, nothing more nothing less. Peoples responses and behaviours around it belong to them. It is not everything but it is something and it is significant. Whilst I practice and ease myself into the reality of it I find that I need help, support, acceptance and understanding too. The chemo (NHS funding dependent) and it’s effects are temporary but the rest of the changes that have happened to date are for the long haul (hopefully no new ones though), So I appreciate you having taken the time to read this, it is pretty exposing but necessary in order to move forward. If I’ve pitched it right hopefully it helps others too”
I am placing real focus now into my artwork, research for the project, finally getting around to updating and slightly changing my website and the community art studio as these are the things that help me through and also equally help others.
(Not my image, sourced online all rights belong to the original owner)