Recovering from a Setback
Hello! I’m back, yey. Sorry for missing last week. How have you all been? It feels like I haven’t written anything in ages, so do bare with me if I’m a little rusty. I felt so rude not replying to people or keeping up with my friends on here, but I have greatly appreciated the get well soon messages :) so thank you!
I have been recovering from a rather nasty cold/flu and had to hunker down. The cold then triggered a massive flare up of my chronic illness and my whole body felt so inflamed. It felt like I had taken a million steps back with my health and I know I just needed to concentrate on feeling better.
Also, my husband and I had booked tickets to go see one of our favourite bands, Sleep Token, at the O2 arena last Friday and we desperately needed to recover from this cold so we could go and enjoy it.
It felt like everything I had learnt over the past year about selfcare and recovery was being tested. The old me would have just tried to work through the cold, to try and be productive still, I would have beaten myself up, got angry and cursed the universe for getting me sick right at the time I needed to be well.
At first I was super frustrated. I really thought I wasn’t going to make it to the concert that we had so been looking forward to for months! I have been working so hard to get my energy levels stable and I was feeling really good mentally before catching the cold.
But I’m learning that life with a chronic illness never goes to plan. There is always a setback of some kind you have to deal with. Sadly, your chronic illness will not give one shit about your plans. Instead you have to be adaptable, you have to be kind to yourself, even when you feel your body is letting you down. That is the exact time you give yourself loads of love, grace and patience instead.
So this time, I threw everything I had at this damn cold and flare up. I ate really healthy, kept hydrated, spent a small fortune on cold remedies and medications, and of course rested, rested, rested. I told myself I am not putting any stress on myself to keep deadlines (with writing), we cancelled all social plans. The house looks like a mess, but I told myself that nothing bad is going to happen if I don’t clean for one week! I just hunkered down in my bed and watched all the Harry Potter and The Lord of the Rings movies. I gave myself complete permission to just ignore the outside world. I barely looked at social media or the news to avoid any unconscious stress. I didn’t even read much, to give my brain time to fully switch off.
So after two weeks of feeling awful, we make it to the concert, phew! I think I will write a whole separate article about going to a concert with a chronic illness because we had to put so many things in place to make sure it went smoothly. But we really did enjoy it and I’m so glad we got to go in the end. I think it felt even more special because it took so much to get there.
The ‘new me’, the one with a chronic illness, is now trying to see each setback as a chance to learn more about myself. A way of assessing what changes need to be made to make my lifestyle more accommodating.
For example, since having this chronic illness, I really try to not book anything too far in advance because I have no idea what my health and energy levels will look like in the future. However, this was a special occasion after all. But making big plans when you have a chronic illness can really put a lot of stress and pressure on you. I have learnt from this experience that I will try to limit making such big plans again in the future. Not until I feel a little more stable with my energy levels at least. Or if I can’t avoid it, then to give myself a couple of weeks before the big event, where I limit my chances of picking up a cold or draining my energy with social events. I also need to give myself sufficient time to recover after the event.
I need to remind myself that I can’t just ‘push through’ things anymore. A simple cold may be ok for others to work through and to get over in a few days, but for me a cold could take me out of action for a month or more. ‘Pushing through’ and putting too much stress or expectations on myself is just not worth the mental and physical repercussions anymore. I am so done with feeling crap. I want to do everything I can to make my life the best it can be, for me and my husband.
Going forwards I want to simplify my life, in the ways I can, to save my energy. That’s just how it has to be from now on. I have to learn to adapt, to put boundaries in place and to not feel guilty or pressured into making a lot of plans. I know this now. I’m slowly learning that the old me, the old way of doing things just isn’t sustainable. I kept trying to fit in with society and how everyone else was doing things, but I know I can’t live like that anymore. It makes me physically unwell and I now have too much respect for myself to keep putting myself through it.
I know this particular stint of burnout and flare up will take a while for me to recover from. The cold still hasn’t fully gone and the stiffness and pain in my spine is particularly painfully this time around. But hopefully, with continued selfcare and rest, I will feel better in time to enjoy Christmas.
And this has also taught me, that Christmas and New Years (and such events like that) will also have to look very different for me going forwards. I have realised that I have been subconsciously dreading Christmas this year. The holidays can be incredibly stressful for people with chronic illness. I think I will also write a sperate article on that and how I plan to get through it this year- any tips from seasoned pros will be very much welcomed!
But overall, I have learnt that no one really prepares you for the amount of change that happens after getting diagnosed with a chronic illness. No one tells you how to overcome repeated setbacks with your health and your life. It can take years of learning how to shed your old way of life, your old thought patterns, your old roles and expectations. It’s like going through a type of metamorphosis. A complete transformation that takes place, but in many stages. Most of those changes won’t even be noticed by others. They won’t even realise the amount of sheer will and determination that is happening underneath the surface. They will never realise how strong you always have to be.
This latest setback feels like a huge shedding of my old ways and learning to live in my new body, my new form. It’s not easy, it can literally be quite painful at times. But I’m also feeling hopeful about the future. I’m putting things in place that feel more sustainable. Changing my lifestyle to a way that feels comfortable and healthy. A life that ultimately feels more authentic. I’m not living for everyone else anymore. It’s a different way of living, but it’s mine.
How about you?
How do you recover from setbacks with your health? How do you get through big events like concerts, or holidays like Christmas? I know that my American readers would have just celebrated Thanksgiving- how did that go? Did you need to put anything in place to help manage your stress and energy levels? Do you put certain boundaries in place? How do you manage the expectations of your family and friends around this time of year, especially when it feels like you’re pushing back on fixed traditions? How do you protect yourself from colds and flu at this time of year? I would love to know in the comments.
Sending you all healing thoughts. See you next week!
Lots of Love & Hugs,
Amanda x
I’ll have to do my own piece on getting through the darkest times and what happens when you think you’ve gone backwards. It’s a topic that crops up more and more of late.
It’s been a long while since I experienced colds flooring me for weeks on end. Last year I had a mild relapse March/april/May but it was mild. This year when I get a cold, it’s exactly that, a 2 day cold. Of course, it wasn’t like this for many years. But that’s where chipping away at it like you are doing will take you.
Re Christmas, I immediately made a change at the point of no longer working to no Christmas presents. £5 budget for each niece and nephew, that’s it. Me and my boyf don’t do gifts or cards. Super quiet restful Christmas and new year.
Christmas at his mums 22nd (amazing!) we take her to Scarborough Xmas eve. Family get together my end just being arranged for 29th. Going to the lakes next weekend with friends as our Xmas treat to ourselves/each other. Already, this is way more than enough.
The work still continues on for me. The changes I’ve made in my life are changes for life. I fully expect to continue improving health wise - even though I’ve frequently been told it’s not possible, not even to get as far as I have (yet there’s never been any medical interest in exploring). All that keeps happening is that my health continues to improve. As slow and as up and down as it is, bothers me not. Like you say, this is my life and I’ll live it in a way that supports my wellbeing. Not the way I was led to live it before.
It's never easy. You are still waiting to begin your therapy with biologicals? When I had to take cortisone while the immune suppression (Metothrexate at the time) was building up, I found that small infections, like a sore throat, were hardest and most difficult to shake off. It took me almost two months when I caught scarlet fever from a toddler on my lap at a family gathering. Since I am on monoclonal antibody therapy, it has become much easier but then I have also learned my lessons to stay away from crowds and avoid public indoor gatherings especially during the winter months when more people seem to have (and spread) rhinovirus infections.
The thing I am still trying to come to terms with is that every time I fall ill with something "new" and that could just be a sinus infection or a tummy bug, my mind immediately comes up with the "what if" question, what if this is another battle ground of this autoimmune disease and so on. When I had a UTI last summer, my GP said, at least here we have something that will go away again, so you can relax.
I hope you feel much better soon.