And yes I’m going to shout it from the rooftops because living with a life-changing chronic illness is bloody hard (and that’s on a good day)!
Nobody else quite understands my personal difficulties exactly. Or what it’s taken to navigate them. There are many sacrifices I’ve had to make, more low points than I can count and an endless number of challenges I’ve faced every single day.
I’m not bitter and I don’t tend to dwell on the negative. I still love so much in my life and I’m grateful for everything I have. However, chronic illness impacts heavily on every aspect of my life and the truth is that this makes life tough. Tougher than I ever could have imagined before I experienced it myself.
Although living with a life-changing chronic illness is the hardest thing I’ve ever done it’s not exactly a high profile achievement. It has the least recognition, reward or celebration of all of my accomplishments despite deserving the most.
So I’m celebrating it myself right here and now! Feel free to join me in celebrating your own achievements from this year too by sharing your own personal highlights…
A year in celebration
For anyone new to my blog, I have Multiple Sclerosis and since I was diagnosed in 2015 I’ve been living with chronic fatigue, balance issues, dizziness, coordination and brain fog ever since. To help reduce further relapses I take medication which acts as an immunosuppressant.
This year I’ve had to deal with plenty of big things such as losing my job because my fatigue was too debilitating to work through. I’ve also completely overhauled my diet and lifestyle which I never imagined I’d be able to do.
In some ways though it’s the smaller things which are hardest; like handing over my son to be looked after by someone else when my fatigue gets to be too much, every single day. Or trying to plan my life around an unpredictable and all-consuming illness. It’s also feeling isolated from the people around me, going from one cold/stomach bug to another or even, at times, feeling like my illness is dictating my personality and negatively influencing my relationships.
I could go on but I won’t! As I’ve said, there are many things I’m happy about in my life and I try to focus mainly on them. I love spending time with my family, especially my little boy who means the absolute world to me. I also like being creative and blogging has been a great outlet for me this year.
So I’ve picked out a few highlights from the year, both good and bad and I’m going to celebrate them/celebrate that I got through them!
The most difficult time
As I’ve mentioned, I lost my job at the beginning of the year and this was such a hard experience. Not just because I loved my job as an art teacher and had worked passionately to create the best art department that I could but because I knew there was no other job I was capable of doing either.
I felt powerless in the face of my illness and had to finally accept my new reality, which was that I was chronically ill and not getting any better. I’d had part of my identity and purpose in life taken from me and there was nothing I could do about it.
I was also really scared of what this meant for my family and I financially. I wasn’t confident I would get anywhere when applying for ill-health retirement and ESA as MS is such a misunderstood, invisible illness (I was finally awarded both by the end of October with many months of waiting and worrying in between).
The most enjoyable time
Any time I’ve been able to spend with my son as every moment feels so precious. I certainly don’t take it for granted and you can bet that if I’m having a good day I’m going to make the most of it, even if I’m having a bad day I still do everything I can to make the best of a bad situation.
I also have a few close friends who are really supportive and so much fun to be around. They remind me that it’s good to laugh and not be so serious all the time. They help me to forget my illness and make me feel normal when everything else fails to.
The most annoying time
Due to the fact I take immunosuppressants to help reduce my relapses I pick up every bug around, especially now my son has started nursery. I’d love to pick just one time when I’ve been ill but I’m lucky if I go two weeks without a cold or something worse. I’ve had countless sore throats, foggy heads and days in bed with exacerbated symptoms.
Maybe the highlight was the projectile vomiting bug that I caught a couple of months ago, the stomach pain that came with it was horrendous and I couldn’t eat properly for over a week!
The worst thing with catching loads of illnesses is I just feel like I’m getting on top of things with housework, diet and exercise etc. when the next illness hits so I’m out of action, getting behind and having to play catch up again!
The most encouraging time
Having said how difficult it is to feel like I’m making progress due to all the endless colds, during the in between times when I’m ‘just’ dealing with MS I have noticed an improvement, As I mentioned, I decided to focus on my diet and lifestyle 6 months ago and I really feel like it’s helping me to manage my condition better.
I now follow the Overcoming Multiple Sclerosis (OMS) program and although it is still early days I’ve definitely noticed an improvement with my brain fog. It feels amazing to be able to think more clearly.
My most encouraging moment though was when I managed to take myself swimming last month for the first time in 18 months. I managed a whole 15 minutes and only around 12 lengths but it felt brilliant and I wasn’t completely wiped out afterwards. I went a couple of times before picking up another illness and I really hope I feel up to going again soon.
It’s also things like being able to look after my son for longer, drive (short distances) more frequently and do more exercise which makes me feel like I’m on the right path and that I can make a difference to my health, no matter how small.
The most confusing time
Everything about MS is confusing but I think the most confusing (and most frightening) time is the moment when you realise you’re getting ill and you begin to ask yourself the question ‘am I having a relapse?’. This happened to me earlier in the month.
I started to feel ill (which isn’t unusual!) but I had no signs of a cold or bug it just felt like a storm was building in my head. It wasn’t a migraine, it was as though my brain was having a meltdown which left me completely out of action for several days.
At the time it was hard not to panic and think the worst but I had no new symptoms emerge and no lasting worsening of my condition once my brain ‘storm’ had eased (which I’m really thankful for). However, I can’t help but wonder what triggered it and was it a bad sign, a good sign or just nothing of note at all? Where are all the answers?!!!
The most inspiring time
At the risk of sounding incredibly cheesy, my inspiration this year has come from you! I began this blog at the start of the year after reading some chronic illness blogs and realising that I didn’t have to let my illness isolate me. There were others out there going through similar struggles to me who had the courage and drive to share their lives and offer excellent advice and support to anyone who needed it.
Suddenly, I realised I could regain some of the purpose I felt I’d lost after having to end my teaching career. I could have a real creative outlet and use my own experiences to help others. Two of the things I loved most about being an art teacher I could still do just in a different way!
One year down the line and I still look to so many chronic illness bloggers for inspiration and support. I’ve even made some friends through blogging who are really lovely and they thoroughly understand what living with a chronic illness is like.
Any time someone reads my blog, comments on one of my articles or even follows me on social media it inspires me to keep going. Your support is a huge motivator for me and I am really grateful for it. It makes me feel like I’m making the most of a pretty rubbish situation and helping as many people as I can, hopefully with my advice but also just helping them to feel less alone.
Please do join me in sharing your highlights from the year
Those of us living with chronic illnesses and disabilities don’t celebrate everything we manage to achieve enough. We really should you know, I think we owe it to ourselves and we need to give the world around us a gentle reminder of what we’re up against too!
With that said, I’d love to read your experiences and achievements!
So that’s it from me until the New Year when it’s my blogiversary! I plan on enjoying a fun (and hopefully not too tiring) Christmas with my family and friends in the meantime.
Wishing you a lovely Christmas and a good year ahead!!!