I thought I’d share a post sharing some tips on staying cool in the summer heat when you have chronic illness. Why? Well because chronic illness and chronic pain make coping with everything much more difficult.
Here in the UK we don’t get a gradual warming of the weather leading up to our summer heat. One day we may be in a jumper and jeans and the next we are in shorts and flip flops! In short, our bodies do not get the gradual acclimatisation that other warmer countries may get as they go through the seasons. It’s not uncommon in the UK to get all 4 seasons in one day.
I think it’s hard enough for people with ‘normal’ working bodies to cope with our heatwaves. But throw in the complications of having a chronic illness that causes having no body temperature control.
One of the biggest downfalls of having chronic illness is that no one is really interested in how you actually are. The phrase ‘I’m fine’ is incredibly overused. So, I wanted to share the chronic illness code for ‘I’m fine’ and a few others that we would say, but actually tell you what that means.
Most of you will know by now I have ME/CFS (Myalgic Encephalomyelitis / Chronic Fatigue Syndrome), Fibromyalgia ( widespread musculoskeletal pain) and more recently Joint Hypermobility in my hands and ankles. This is when when joints can dislocate and hyper extend easily.
I’ve had chronic illness and pain since 2009. Even with high levels of pain medications, including morphine, I still experience pain 24hrs a day, 7 days a week and 52 weeks of the year. In truth, I can’t remember of a time when I have been pain free in the last 8 years at least.. I read recently that the full list of symptoms of an ME or Fibro patient is the same as a patient with AIDS around 2 months before death. Just let that sink in.
The most frustrating thing about my condition is that it’s completely INVISIBLE. There is nothing to see, no bruising, no swelling of joints in my case, no identifying marks on the skin. Yet my body is wracked with pain daily. It also varies day by day which doesn’t help at all. In my case it’s generally at it’s worst in the winter.
I’ve also written about ways I can use heat to help with pain levels and trying to stay warm here as it’s just not possible to have your heating on 24hrs a day!
So, I wanted to share the chronic illness code for ‘I’m fine’ and some others but actually explain what we mean, to help you gauge how we feel on a particular day.
I started my Invisalign treatment in October 20 and I am now 12 weeks into my 20 week plan and I wanted to share some tips.
My Invisalign trays are changed once a week and I have a dental check up and collect my next set of 4 trays every month. This has worked very well so far and I really cannot believe I am already using week 12.
I can see an incredible difference so far and I am so looking forward to the final result. It makes wearing the trays for AT LEAST 22 hours a day worth it. In fairness with the way everything has worked out, considering all the Covid related madness, I probably couldn’t have chosen a better time to go through the treatment. For a start I pretty much haven’t been out and about at all apart from a few times during OCT/NOV when we could actually physically go into somewhere to eat food. So I do feel I have been less restricted than most people having this treatment in what would be considered ‘normal’ times! Read more
Podcasts are now unbelievably popular and therefore, demand for podcast guests has increased massively. There’s pretty much a podcast for any subject. Review podcasts for film and TV. Conversation podcasts on all sorts of subjects from the lighthearted through to the very serious. There are comedy podcasts, political podcasts, mental health podcast, parenting podcasts, the list goes on and on.
So, unless you’ve been living under a rock you will have heard of them. More than likely you will have listened to a few favourites on a regular basis. With that in mind I’m going to share 5 helpful tips for a podcast guest after my own experiences.
Early this year I was asked to be a podcast guest for the very first time. To talk about working from home/ running your own business while dealing with a chronic illness condition. It was my fellow spoonie Gem over at The Quirky Gem who asked me to be a guest on her own podcast series ‘In Conversation with’.
Top tips to keep warm in the winter with chronic illness and chronic pain
If you’re new to my blog, when I talk of chronic illness and chronic pain it’s because I am diagnosed with M/E/CFS, Fibromyalgia and Joint Hypermobility. I’m now 10 years into living with these conditions. Over the years I’ve become a dab hand at being resourceful at ways to keep warm in the winter with my chronic illness. All without having to blast my heating 24 hours a day.
In very simple terms my illnesses mean I am constantly exhausted and I’m in pain ALL OF THE TIME! We may say we are ‘fine’ but internally our bodies are screaming. Check out our ‘I’m fine’ code here.
As our house has been extended our bedroom is in a Dorma loft. That would mean me having to heat a 3 storey house with only me in it, when my husband and son are at work.That just doesn’t make any financial sense to me to do that. Just call me Scrooge!
So I have become a bit creative with it all. And I wanted to share my top tips to keep warm in winter with chronic illness and chronic pain,
I’ve specifically done this list of what to buy older teenage boys for Christmas because I have 2 boys myself. Therefore, I only have real experience of buying for them.
Anything I have suggested here I have bought my teens through the years or I know of friends who have bought their boys similar. Secondly, none of it has been sent to me to be promoted, so any companies I mention here I have actually used or bought from them over the last 9 or10 years.
I also think that teen boys are much harder to buy for than girls. Probably because I don’t have girls myself. I imagine with clothes, perfumes and makeup and jewellery most things can be covered for girls. Certainly a designer item could certainly be covered as a main Christmas present. I fully appreciate I could totally be wrong about this too. But I have only experience in buying for boys in this house and so I think that is where my expertise lies.
My eldest baby left us on 12th September this year to start his university adventures. I didn’t want to write about it straight away ( or before) as my head was literally all over the place with a huge mixture of emotions. Yes I was unbelievably proud of him, but I was, as most mum’s would be, absolutely terrified that he wasn’t going to cope! It was so hard to leave him there on his joining weekend although we are lucky enough to be relatively close enough to go there for a day visit- which we did the next day to take him for a final family meal before leaving him properly.
Almost a month into his new independent life and I am super pleased to say that he is not only coping very well but he is also loving his new found freedom. He has done several weekly shops now ( he loves the fact that he has an Aldi near him) and also done a few clothes washes too…………….this probably amazes me the most. He has also got himself a part time promotions job as well so is now earning a few extra pounds here and there to boost his weekly spending amount.
Having been a qualified driving instructor ( until my illness took over) I know how difficult it can be for anyone to transition from a provisional to a full driving licence, the driving test itself can often be a very daunting prospect. Both the theory test and practical test are actually very straightforward, but the pressure often makes these tests more difficult than they should be. My son has recently passed his theory test and hopefully will do his practical test quite soon ( when he gets a break from uni).
So, If you’re taking a driving test soon, these next five tips will help you prepare better in no time.
I have been meaning to try one of these machines for ages especially for my youngest teens room as his carpet is in a pretty grim state, but it has ended up being a job I just procrastinated about rather than got on with.
So a few weeks ago I sent Rug Doctor a very cheeky tweet with a picture of my son’s excuse for a carpet to see if they would be up for a challenge! Unbelievably they responded immediately and emailed me with an offer to try one of their machines. So, I could procrastinate no more and it forced us into a complete clear out in my son’s room which was well overdue.
So the Rug Doctor carpet cleaner was delivered to my house complete with all sorts of cleaning sprays and the detergent to get started immediately. The very next day my husband was off work he went straight to work with the machine, which had clear instructions on how to use it actually on the machine itself and seemed fairly self explanatory. We just started with a patch in the room to see if we could see a ‘before’ and ‘after’ shot which I think you will agree shows an unbelievable improvement literally within minutes.
First of all this post is really, really late but I will explain that in another post!
Anyway, on to me popping my Britmums Live cherry.
After listening to all the talk on Twitter last year, looking at all the fab pictures and generally feeling like I had missed out. I decided that 2014 was definitely the year I was going to go to the Britmums Live event in London.