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.
I am the worlds worst when it comes to having a positive outlook on using my mobility aids.
It’s been a definite love/hate relationship for me. Even 12 years into my illness I still have that battle.
One of the main things for me personally is the fact my illness is completely invisible to anyone. There’s no plaster casts on my ‘broken joints’. There’s no bruising or swelling visible. I don’t walk with a limp or have a missing limb.
So, to anyone that meets me I look like anyone else. Until they clock that I use a walking stick.
So when I meet people, quite often for the first time, I will be greeted with the usual comment ‘ Oh what have you done?’. Meaning I must have hurt my leg in some spectacular fashion and that I’m now going to tell you the full hilarious story!
When you have long term chronic illness and pain it affects you daily whether you like it or not. There will be days when you desperately want to do all the things, but its just not accessible to you due to pain or fatigue levels. It’s frustrating. So date night ideas when you have chronic illness need organising, or adjusted around what is accessible to you that particular day. Disabled dating is all about keeping it accessible to you.
Dating is an an absolute minefield at the best of times. I’m no longer in that dating minefield. I have been married for over 25 years. I wont pop on my rose tinted specs and tell you those 25 years have been a breeze. I’m a realist so I can tell you they have been worked hard for. That’s one thing I have learnt over that time. It wont be all sunshine and flowers but that makes it all the better when you do have sunshine and flowers.
It’s all too easy to fall into the trap of popping the telly on and scrolling on your phone. But I doubt that will get you anywhere in the dating world. Dating is all about connecting after all. So, even after being together for so long date nights, or days, are a great way of reconnecting for us.
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
I wanted to share 5 social media pitfalls to avoid for small independent businesses, creatives and makers working from home and all those online companies of one, who have to do ALL the jobs themselves.
Social media can be a minefield at the best of times. It’s constantly changing, which means that you think you’ve cracked it and then they add some new option for you to try and get your head around.
You have to constantly try and keep yourself up to date which is why it’s increasingly hard for small businesses to find the actual time to do so. I mean, their ‘To Do’ lists must be off the scale! As a freelancer myself I get it, sometimes there’s just not enough hours in the day.
If you’ve read my last post you will know I decided to start Invisalign Go treatment to straighten my teeth. This post will cover my initial Invisalign Go consultation and 3D scan appointments.
Once I decided that I was interested in Invisalign Go I booked an appointment with my dental surgery to have initial pictures taken to find out if I would be a suitable candidate for this type of teeth straightening. Surprisingly not everyone is.
It literally took minutes and the photos were taken on the dentist’s phone which is linked to an app. Those initial photos will get you the ‘Yes’ or ‘No’ answer pretty much straight away.
I was quite sceptical that I would actually be suitable for the treatment. There is a LOT of movement required to fix my smile.
Invisalign Go treatment is something I have lusted after for quite a few years. But as it’s quite an investment we weren’t in a position to even contemplate it until now.
I have been incredibly self conscious about my crooked teeth for as long as I can remember. Even though I had standard plate braces back in the day. Bear in mind I’ve just turned 50, so that gives you an idea of what brace treatment was available way back then. There was also no real form of after care, retainers or anything remotely similar to keep them in their new ‘straight’ position.
It was inevitable that over time those buggers were going to get on the move after a while.
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’.
Lockdown has changed everyone’s life. We have never in our lifetime seen anything like this. Pretty much being confined to our homes except for work, shopping, exercise or a medical reason, and it has already seemed like an incredibly long time. So, I am going to share 5 things I’ve learned so far during lockdown.
When the whole lockdown thing happened we did consider ourselves to be one of the lucky ones.
By that, I mean my husbands job was secure and he continued to work. My income is secondary and any work that I lost didn’t really have too much affect on the overall financial side of things. So without the added financial stress and uncertainty that a lot of people had enforced on them we considered ourselves incredibly lucky.
That said, like everyone else our daily life changed dramatically. All the things we naturally took for granted as always being available, became obsolete virtually overnight. For me it was cinema trips, coffee shop meet ups, meeting friends for lunch, meeting with clients or just mooching around the shops.
I also suffer which chronic pain so for the last 10 yeas or so, it’s like I’ve been in training for lockdown as my life is probably more sedentary than most anyway.
But, even though I may have adjusted slightly better than anyone living a ‘normal’ life, there are still a few things I’ve learned during the lockdown period so far.