When dealing with the day to day grind of chronic illnesses and disability its easy to become lost in how hard things are and loose sight of the good things. To try and balance this I make a real effort to remind myself of the things that I am grateful for on a regular basis.
Now, I’m not saying these things totally erase the hurt caused by living with chronic illnesses and their are definitely days where its really hard to see the good in life, but when I am able to step back and remember the things that make life better it really does help.
A loving and caring fiancé who accepts me as I am
Being in a relationship while dealing with chronic illnesses can bring many challenges, many relationships end prematurely because of the pressure of dealing with the constant health challenges. I myself have had bad relationships as a young woman where my then boyfriend was unable to deal with the realities of my needs, so I know how difficult it can be. My fiancé now is a really loving, caring and empathetic person who makes my life better in every way. We face the obstacles together and we have found many ways of making memories while trapped in a hospital bed or sitting up talking in the middle of the night. I know that its not easy for him to see me in pain and unwell but I know he loves me and is willing to take the bad with the good.
Parents who support me
I know that a lot of parents will stop supporting their children when they become adults and expect them to deal with their problems alone. I am very grateful to still live with my parents and have a safe, warm and comfortable place to live. They have made a lot of adjustments and changes to meet my ever changing needs despite the burden that it places on them. The support and love they have given me throughout my life has made me the independent and confident person that I am now and I will never stop being grateful for that.
The NHS
For those outside the UK who may not know the NHS is the UKs national health service, it is free at the point of use and it is available to everyone no matter their background, income, living situation or what condition they have. In wales we have the added bonus of free prescriptions, so any medication that is prescribed by a medical professional is provided free of charge. This is actually life saving for people like me, without free prescriptions I would genuinely struggle to afford my medication including my asthma inhalers and medication for my cluster headaches. Thanks to the NHS I can go to A&E whenever I feel the need to without worrying about any cost implications or concerns about affording care. If we didn’t have the NHS I would probably be bankrupt and unable to afford anything other than a couple of medicines each month and probably no access to doctors or hospitals due to my inability to work.
Access to good pain relief.
While I know that good pain relief should be a right and not a luxury I am acutely aware of how blessed I am to have access to good pain relief. While no amount of pain relief will eradicate the type of pain associated with chronic illnesses, decent pain control can allow a chronic illness fighter to achieve a reasonable quality of life by making pain more bearable. Because of my pain relief I can do some basic tasks for myself such as washing my hair, looking after my guinea pigs, cooking a basic meal and going to doctors appointments. There are still days where these things aren’t achievable, but without pain relief I wouldn’t be able to do any of it. Without pain relief I would definitely be housebound and likely bed bound much of the time. I will always be grateful for compassionate doctors who care about my quality of life enough to issue pain relief, and I will continue to advocate for all chronic illness patients to receive the same level of care.
My Flute
My flute has been an absolute joy these past two and a half weeks and its a really good distraction from the daily stresses of dealing with constant health admin and chronic pain. Music has given me a way to express feelings and emotions that have been hidden away for a really long time. When its just me and my flute the pain disappears for a while and my soul is set free. It gives me a focus and an outlet in a way nothing else really can.
My mobility aids
When I first started to have difficulty walking I was extremely reluctant to use any mobility aids or anything that would identify me as disabled. I wasn’t ashamed of my disabilities but I was worried that using an aid would identify me as vulnerable and make me a target for judgement or mistreatment. Eventually it got to the point where the pain was just too much and it was n longer safe to keep going without a walking aid. i started small with a folding walking stick that I could put in my bag and only use on the worst days, then i moved onto crutches and finally got a wheelchair when it was clear the pain was beyond control and I needed help to make the world accessible to me. Despite my initial reservations I am now proud to be seen with my mobility aids. I no longer worry about what other people think or if they think I’m faking. My crutches and my wheelchair are extensions of my legs. They allow me to go out into the world, they stop my home from being a prison and they make me feel safe. I know that if I’m in my wheelchair and I get a cluster headache its ok, I’m totally safe. I know that if I have my crutches I can walk a short distance safely without falling or damaging my hip even further.
My Faith
I don’t talk very much about my faith because its very personal to me and I never want anyone to feel like i am preaching at them or trying to convert them, and also because I know that a lot of what I believe doesn’t align with many who call themselves religious. Maintaining faith while dealing with chronic illnesses is challenging, I get told all the time that if I pray hard enough or I’m a good enough person then God will heal me. I get told that I just have to ‘want to be healed’. This is not what I believe. I believe that we are all valuable, that we are all special and important and that we are all perfect in Gods image and that this includes disabled and chronically unwell people. I believe that I am the way I am supposed to be. Having chronic illnesses is extremely difficult, but there are so many things in my life that I probably wouldn’t have if I never got sick. I may not have met my fiancé or talked to him the way I did, I may not have had time to rediscover my love for the flute and the joy that brings me and in all honesty I may not have such a strong faith. There are moments in my journey where I knew God was with me, where I knew miracles were happening, where I felt peace in the midst of chaos and I am so grateful for all of those. I believe God has the power to heal if chosen, but I also believe that I don’t need to be healed because I’m not broken.
My Life
There are so many more things I could list here but I over all I am just so grateful for my life. Life with chronic illnesses and constant pain is really difficult and there is no getting away from that, but the flip side is that you learn to see the joy in the tiniest moments. The cups of coffee first thing in the morning, walking down a street hand in hand, sitting on the beach eating chips or sitting on the sofa laughing at stupid TV shows. I know what it’s like to worry that life may be shorter than you imagined and that really makes me grateful for each day.
Chronic musician 