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.
I would love to read that! I need some inspiration and ideas. It's so hard to pull yourself out of the negative frame of mind after a setback, but it's getting a little easier with time and experience.
I love the sound of your restful and peaceful Christmas. That's how it should be right? A time to get all cosy ☺️
I love that you've carved your own path even when people said it wasn't possible. You're living proof! Which is super comforting 🥰
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.
Thanks Sabine. Yes sadly still waiting to start biologics 😴 beginning to wonder if it was all a dream lol
That's so interesting you say that, because everytime I get sick I freak out wondering if this is the new 'normal' and worry I won't return to my baseline again. That's good that your doctor can reassure you though. Mine had to say something similar at my most recent trip. I worried I had a bad sinus infection and told her I was worried all the inflammation in my body wouldn't settle back down, but it's starting to thankfully 🤞after your scarlet fever stint, did you do anything in particular to help yourself recover or was it just a case of rest and time? X
I cannot think of anything specific that I ever did to recover other than rest and wait and distract myself from thinking too much about it. Plus the obvious stuff, like plenty of fluids, sleep, out in the fresh air when you are able, light but healthy diet and so on. Distraction was/is always the best.
Yes I feel the being absolutely wiped by a cold etc. COVID had been a disaster for my health too. So we now mask for anything indoors or air purifiers on and no one with sniffles. It has meant communicating all that to friends and family which wasn't as hard as I thought it would be. My daughter is chronically ill too, so as a family we are all super careful. My eldest still does lots at uni and she's not the only one masking.
Giving yourself permission to really rest is such a good step! I've been in a flare up for over a year now so that has reshaped things a lot. It's made me focus on the creative side of life which I love! It is great to read how others accommodate their needs xx
Argh yes I'm going to have to get used to being strict with masking and asking people before we meet up if they have colds etc, especially when I'm on the biologic medications soon. I worry with COVID too as the last time I had it, it gave me permanent damage to my lungs and don't want it to get any worse! I find it so hard at the moment because everyone I know has young children who pick up germs from nursery all the time. It's tricky to balance being social for my mental health and protecting my physical health.
Sorry to hear about your flare up, but I love how creativity has played such a big part in making you feel better. Your artwork gives me lots of inspiration to pick up my colouring pencils and paints. It's amazing how well it distracts me from my pain when I'm in the creative zone!
The balance is really hard. So much so I started a masking group locally for arts and crafts (people just bring their own) we have air purifier on and wear ffp2 or ffp3 masks. It's a lovely group and it is definitely helping having that to go to without feeling the odd one out masking! Yes tricky with little ones in nursery or school. I ask that people cancel if they have any sort of sniffle/cough. Do you have any air purifiers with hepa filters at home? That definitely helps.
That's such a lovely idea with the craft group and creating an inclusive place for people to feel safe and to still have fun, love it 😊
we did actually recently buy an air purifier for our home after reading a few people say it helped, so that should be useful over the Christmas period 🤞
I really needed to read this today. I am in bed with some kind of cold/virus and completely freaking out about what might be coming or that I will never get better again. It's so frightening and I have lots on this week. I already cancelled something today and got a load of healthy food in. Will cancel work tomorrow rather than trying to push through and just trusting that this too shall pass. Amazing that you were able to action such brilliant self-care x
Aw Chloë I hope you start to feel better soon. I was exactly the same and was worried, but it sounds like you're doing all the things you need to do to help yourself recover- healthy food, scaling back on your to do lists and activities. It's blumin hard to do, especially if you have work and a little one to look after. Colds always seem to come at the worst time don't they?! Try to make myself feel as safe and cosy as possible. Sending you lots of hugs 💞x
Exactly why I refer to myself as an unreliable narrator, with my worn out body that cannot be counted on a anymore. My former reliable ableist identities lost to former busy times.
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.
I would love to read that! I need some inspiration and ideas. It's so hard to pull yourself out of the negative frame of mind after a setback, but it's getting a little easier with time and experience.
I love the sound of your restful and peaceful Christmas. That's how it should be right? A time to get all cosy ☺️
I love that you've carved your own path even when people said it wasn't possible. You're living proof! Which is super comforting 🥰
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.
Thanks Sabine. Yes sadly still waiting to start biologics 😴 beginning to wonder if it was all a dream lol
That's so interesting you say that, because everytime I get sick I freak out wondering if this is the new 'normal' and worry I won't return to my baseline again. That's good that your doctor can reassure you though. Mine had to say something similar at my most recent trip. I worried I had a bad sinus infection and told her I was worried all the inflammation in my body wouldn't settle back down, but it's starting to thankfully 🤞after your scarlet fever stint, did you do anything in particular to help yourself recover or was it just a case of rest and time? X
I cannot think of anything specific that I ever did to recover other than rest and wait and distract myself from thinking too much about it. Plus the obvious stuff, like plenty of fluids, sleep, out in the fresh air when you are able, light but healthy diet and so on. Distraction was/is always the best.
Distraction has been key for me too! Thank goodness for Netflix 😅
Yes I feel the being absolutely wiped by a cold etc. COVID had been a disaster for my health too. So we now mask for anything indoors or air purifiers on and no one with sniffles. It has meant communicating all that to friends and family which wasn't as hard as I thought it would be. My daughter is chronically ill too, so as a family we are all super careful. My eldest still does lots at uni and she's not the only one masking.
Giving yourself permission to really rest is such a good step! I've been in a flare up for over a year now so that has reshaped things a lot. It's made me focus on the creative side of life which I love! It is great to read how others accommodate their needs xx
Argh yes I'm going to have to get used to being strict with masking and asking people before we meet up if they have colds etc, especially when I'm on the biologic medications soon. I worry with COVID too as the last time I had it, it gave me permanent damage to my lungs and don't want it to get any worse! I find it so hard at the moment because everyone I know has young children who pick up germs from nursery all the time. It's tricky to balance being social for my mental health and protecting my physical health.
Sorry to hear about your flare up, but I love how creativity has played such a big part in making you feel better. Your artwork gives me lots of inspiration to pick up my colouring pencils and paints. It's amazing how well it distracts me from my pain when I'm in the creative zone!
The balance is really hard. So much so I started a masking group locally for arts and crafts (people just bring their own) we have air purifier on and wear ffp2 or ffp3 masks. It's a lovely group and it is definitely helping having that to go to without feeling the odd one out masking! Yes tricky with little ones in nursery or school. I ask that people cancel if they have any sort of sniffle/cough. Do you have any air purifiers with hepa filters at home? That definitely helps.
Creativity is definitely my sanity!!!! Xx
That's such a lovely idea with the craft group and creating an inclusive place for people to feel safe and to still have fun, love it 😊
we did actually recently buy an air purifier for our home after reading a few people say it helped, so that should be useful over the Christmas period 🤞
I feel this in a 'been there, done that, have the chronic illness' kind of way. So many lessons! Thanks for sharing your journey!
Thank you Miranda! I think we all need that quite literally on a snazzy t-shirt 🤭 x
I really needed to read this today. I am in bed with some kind of cold/virus and completely freaking out about what might be coming or that I will never get better again. It's so frightening and I have lots on this week. I already cancelled something today and got a load of healthy food in. Will cancel work tomorrow rather than trying to push through and just trusting that this too shall pass. Amazing that you were able to action such brilliant self-care x
Aw Chloë I hope you start to feel better soon. I was exactly the same and was worried, but it sounds like you're doing all the things you need to do to help yourself recover- healthy food, scaling back on your to do lists and activities. It's blumin hard to do, especially if you have work and a little one to look after. Colds always seem to come at the worst time don't they?! Try to make myself feel as safe and cosy as possible. Sending you lots of hugs 💞x
Thank you x
Exactly why I refer to myself as an unreliable narrator, with my worn out body that cannot be counted on a anymore. My former reliable ableist identities lost to former busy times.
Ha I like the unreliable narrator, I might have to start using that too! 😌