I haven’t been diagnosed yet but I have a feeling its going to go that way as I have quite a few symptoms. I was supposed to be going to a festival this weekend but I’ve become quite heat intolerant recently. By the looks of the weather forecast it wasn’t going to be that hot over the weekend but I’d been worrying about it for so long and eventually had what i suspect was a panic attack yesterday evening. I don’t really have the energy to go now regardless of the heat. I feel really guilty about not going and feel I’ve let my friends down (I tried to explain my problems with the heat but they didn’t understand). I feel guilty that I’ve let my dad down as well as he gave me the money for the ticket (I bought the ticket when I thought the heat intolerance was a fixable problem) and part of me is convinced I’ve made a bad decision and missed out on a good experience. Sorry if this doesn’t go here, this would be a lot easier to explain to people if I did have a diagnosis and I’m wondering how I do explain this to people without worrying them
Oh, that’s such a shame you missed out, but you know your body better than anybody, and you know whether you can cope on a certain day or not.
I know it is difficult to miss out on things…I have to do it more and more frequently these days and it is really upsetting. However, if you feel you really can’t cope with something then you are making a sensible decision giving it a miss…having to pay the inevitable price for going when you don’t feel up to it is usually much worse than staying at home and being kind to yourself, despite feeling sad that you are missing out on something.
It is something I will never fully come to terms with, but am learning to put myself first and not force myself to do things I know I can’t cope with just in order not to upset people. I missed my stepson’s wedding recently as I just knew I wouldn’t be able to cope with the day. I felt awful, but he and his wife totally understood and didn’t make me feel bad for not going.
I’m sorry you’ve missed out, but at least you are safe and resting at home. This is one of the hardest things about chronic illness, and something that many people not in that situation find hard to understand.
Be kind to yourself, and try not to feel too sad xx
Hi, it really is a chuff when we want to do something, that we used to do without any problem.
When you have little
outward symptoms, it can be really difficult to get others to understand and give you some empathy.
Hopefully your true friends will
Here’s my personal experience - I was supposed to be going to a festival with some friends and despite having issues with heat, I went anyway because I didn’t want to miss out & didn’t want to let my friends down. I ended up fainting twice and being carried off with everyone watching and my friends had to stay with me until my boyfriend came to pick me up. I severely paid the price for ignoring my body and what it was telling me. I know you are worried about letting your friends & dad down but they should understand that heat isn’t good for you. I’m sure your dad completely understands and would rather you stayed at home and looked after yourself. Your true friends should also understand that something is going on as well.
You should never ever feel guilty for taking care of yourself and listening to what your body is telling you. I cannot stress that strongly enough. I ignored my body and ended up ruining people’s day when I attended the festival. On another occasion, I ended up with severe muscle weakness! Listen to and trust yourself and your instincts.
I’m a bit late for this, but I wanted to share my hobby with you so maybe you can go next year:
I volunteer for Welfare at festivals, looking after people who need us. Most have taken things (or drunk things) that they weren’t supposed to, but we also get quite a few people who have medical conditions and just need a place to rest or take their meds safetly. I do find the heat can get a bit much sometimes, and work can get a bit exhausting, but I refuse to give it up because I love it (despite the large quantity of sick bowls I hand out!).
I’ve found ways of avoiding the worst of the heat and know when I need to sit down, plus my best friend is my boss and she can get pretty insistant if she sees me starting to flake!
I know working is a bit different from the usual festival experience, but we’re up all night and out in the sun during the day, sleep in tents (when we can) and have to eat the nasty crew food, so I’ve learnt how best to look after myself - even down to leaving my Betaferon with the medics so that it doesn’t end up in the wrong hands.
My advice, if you do want to go next year, is go, but plan in advance. Book a space in ‘Quiet Camping’ or ‘Family Camping’, take ear plugs so you can sleep and carry a hand-held fan and water everywhere you go (you can get water from welfare or the medics. We hold extra for that very reason) and if you let the crew know you have a medical condition in advance, you should also get lifts on the golf buggies if you get too tired to walk.
I’m not saying deciding not to go was a bad decision at all. I just don’t want you missing out so I hope this helps some.