“I have never stopped living my life and fight to continue to do the things I love until I can’t. In the last seven years I have continued to work full-time and completed a Masters.”
I recently ran a fundraiser for the Brain and Spine Foundation in honour of my birthday on Facebook. I really appreciate the charity and the involvement I have with them and that they support all people with such a wide range of conditions. I was chuffed to go way beyond my fundraising target and raise £316 - especially as so many are having a tough financial time at the moment. The organisation asked if I wanted to write about my experience with my condition, which I had been wanting to do for some time.
So here goes…
I was finally diagnosed with Chiari malformation in 2000. Like many, I had had a few years of misdiagnosis and then the suggestion that symptoms were psychosomatic. I never had severe headaches but had symptoms similar to multiple sclerosis and was struggling to work as a ward-based nurse at the time.
I had foramen magnum decompression in March 2001. It is known that approximately 20% of people do not have long-term relief from symptoms and get worse. I fall into this category. Over the last twenty years have been investigated for the usual associated conditions of Chiari such as syringomyelia and other neurological problems, with no answers as yet. I am currently having further tests for a second diagnosis, however, I am aware there may not be a diagnosis as it could be related to Chiari and that neurology is a complex field.
Over the last four years I have become significantly disabled, which was a shock. I am told I have complex symptoms by my specialist physician who has been absolutely fantastic in his care of me, he and my GP are extremely supportive which I know I am very fortunate to have.
“There is no clear reason why this is happening to me and it has been a difficult adjustment. It has been twenty years since my surgery and it can be exhausting at times.”
The complete lack of information (either written or when I have appointments with neurologists or neurosurgeons) for people living with this deteriorating disability and the daily symptoms, I have found so disappointing. The surgery didn’t fail, as far as I know, this is just how it is for some people with Chiari. I don’t blame anyone for that part. But where is the specialist support now? It feels like they have given up on me. Trying to talk to neurologists about symptoms or more sensitive issues such as incontinence or sexual dysfunction is so awkward for them - and in my experience they are clearly not comfortable with this. As a specialist palliative care nurse, the people in my care are free to talk about anything and everything that is important to them, and I will support by holding that space for them. My specialist physician & GP have been the only people who have done this and treat me as a whole person. They are also honest in that this is not their area of expertise and need neurology to do their job to best support me. One neurosurgeon’s response was to say to me “just live your life”.
Wanting answers is not unreasonable and for a specialist to say “I really don’t know, but we will support you” is also an honest and welcome response should it ever be forthcoming. It’s fair to say that I am angry about the lack of neurological care and they do not seem to appreciate how much of an impact uncertainty, worsening disability & symptoms have on me. I know the symptoms and disability can’t be reversed but it does not feel right to be abandoned by experts.
I have been a qualified nurse for over twenty-five years and I love my job. I am frontline and I work in the best team. I know that I will not be able to continue in this role for much longer which is incredibly sad. I see younger colleagues or people that I trained with advancing their careers and I have not been able to due to my health.
I now have to use a walking stick all the time due to bilateral leg weakness and muscle wasting. I’ve developed bilateral foot drop and am ‘skin numb’ from my chest down. I have tremors and spasms in my limbs which can be severe and am in pain most of the time at different levels depending on my activity. I am hoping I can find a different role that I can be as passionate about as this is really important to me that I am having a positive impact in my work.
I have amazing friends who are family and wonderful parents but who now are both frail and housebound, I should be doing more to care for them. The things that I previously enjoyed outside of work such as going to the gym, yoga/pilates classes and having a social life are now limited. I have to plan according to energy levels and how I am in myself. I will still go to live standing gigs when they are able to be held again but I know it will now be with two walking sticks and will cause severe pain.
“However, gigs ‘empty my head’ from work and everything else and give me great joy.”
Accepting my disability has been a difficult at times & can be cyclical. Two days ago, I had an inflatable hoist put in the bath as my legs are not strong enough to stand. I have a raised toilet seat and my furniture has been lifted to make it easier to get up. The bathroom looks medical to me which I find hard, despite these items being of use.
I am fortunate to be able to pay for a private psychotherapist who knows me well and I take all of the distress and pent up emotion to her. I am lucky to have amazing friends but this has been going on for so long I really don’t know how they do it. I hope I give back as much to them and it really bothers me if they hold back on telling me what’s going on in their lives because they are trying to protect me. They are well aware of this!
When I first started to use a walking stick I was bombarded with questions from well-meaning colleagues and have been verbally abused in the street by strangers. The sticks I use are colourful and different so are a great way to divert the questions when needed. I was targeted by muggers who as well as being physically violent used disability slurs towards me.
As a family we have always talked openly about our wishes if anything should happen to us in the future – perhaps this is because of my palliative care background. I have written an Advance Directive to Refuse Treatment & a Lasting Power of Attorney for Health & Welfare which have been fully discussed with my specialist physician, GP and loved ones who all support my wishes. I have written a piece on why I felt it was so important for me.
I aim for 10,000 steps a day, have adapted the exercises I do and use indoor exercise videos when I feel up to it. It is important for me to maintain my mobility as long as I can and I feel being stubborn around continuing as normal as much as possible has helped me keep going. However, this is individual to me and there is no universal right way to manage a condition. I have a cat (who is the best and such a lovely little thing) and music is a big part of my life. I have become an avid reader of disability literature and follow many people on social media who are influencers and activists for disability. I rest on my days off when I need to and manage my energy as best as I can, such as batch cooking a huge amount on a good day to get me through the following weeks so eating when I get home from work is simple.
Prior to the pandemic seeing friends in London and further afield is a big part of my life – like everyone we have adapted to keeping in touch in various ways. My support bubble friend and being around wonderful colleagues has been essential. Whisky helps too occasionally!
Despite the daily struggles and the uncertainty I face there have been many positives:
- Friendships and relationships with the people I love have become deeper, we talk in real terms and more openly about everything. They are amazing people and I trust and love them very much.
- About six months ago I became joint Chair of my hospital’s disability staff network. With my colleagues we are working with the Trust to improve and raise awareness of all disability. I have been very supported by my managers to do this work. I have made new friends, learnt so much about other people’s disabilities and the impact this for them.
- In my work I am bolder in having important conversations with people in my care & their loved ones to find out what really matters to them.
- I have worked with the Brain and Spine Foundation to support their information for people with Chiari. I have found their Helpline very useful and supportive the two times I have called when I was at my wits end!
- I recently had Covid-19 and was quite sick. An amazing thing happened when I got better. I have had depression since my original diagnosis which dips at times, and had been having a very difficult few months feeling like I had no direction and not being able to see a positive future. Talking with my therapist I realised that I have the time and ability to do something now I have wanted to do for a long time. I am drafting a book related to disability and hope to interview a large number of disabled people regarding certain issues. I have no idea whether it will be any good but disability is something I am very passionate about and I hope this will be my legacy.
- I have found the #DisabilityTwitter community which is, in general, a safe and supportive space
“In essence: living my life, spending time with those I love, doing the things I enjoy and having my wishes and preferences for when I get worse is the only control I have and is vitally important to me. My philosophy in life is “Everyone is fighting a battle you know nothing about, be kind always.”
What would I tell someone at the start of an experience similar to mine?
- Do your research and take your time deciding about surgery. Find out as much as you can.
- Seek out medical professionals who listen to you, take their time and people who care about what is important to you.
- Learn what self-care works for you and prioritise what is important to you.
- If you do have surgery don’t rush yourself back to your usual activities.
- Don’t be afraid to seek psychological support, it is not a weakness and is part of self-care. Don’t shut your loved ones out, you need to explain what is going on for you as you cannot expect others to just ‘get it’. Ask for their help in whatever way you need. People who love you may be feeling helpless and will be most likely relieved to be a support.
- Connect with others who share your experience, there is such as benefit in mutual support.
- Understand that it can be a process and be gentle with yourself. Talk to yourself in the voice and way you would talk to a friend
- Do your research and take your time deciding about surgery. Find out as much as you can.
Jan's 'Sober for October' Facebook fundraiser for the Brain & Spine Foundation is taking place this autumn. If you’d like to hold a Facebook fundraiser, like Jan, then we’d love to hear from you. Get in touch with us: email@example.com.
If you need information and support in relation to your neurological condition then do not hesitate to contact our free, confidential Helpline on 0808 808 1000, or email firstname.lastname@example.org.
Finally, we like to share the experiences of real people who are using our services to help demonstrate the difference our work is making. Sharing your story is the most powerful way to help others realise they are not alone and to help drive positive change for people affected by neurological conditions. If you’d like to share your experiences, like Jan, get in touch.