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.
Staying in control of the housework with chronic illness
There is no denying the cleaning frenzy that has spread like wild fire online over the last few months. So I would like to say from the start this is NOT another jumping on the bandwagon post, but more of a recommendation of what I found has worked for me. First of all I would like to make it clear that I’m not judging any of these accounts or slating one because I like another. I’m firmly in the camp that there is enough room online for everyone doing their own thing in the way that suits them. This is just a recommendation on how to stay in control of the housework with chronic illness that totally works for me in regards to my illness and pain levels.
I make no secret of the fact I have chronic illness which sees me deal with chronic, persistent pain daily. In fact I cannot remember the last day I was pain free. Not to be flippant but if I woke up pain free I would probably think I had died.
Anyway, before this HUGE cleaning frenzy craze took hold of everyone I literally stumbled upon an Instagram account that was less about just cleaning random things at any one time and more about a cleaning method that spanned over the week. It’s been well thought out and covered the whole house on a weekly rotation while keeping to a minimal amount of time. Just 30 minutes a day in this case. The more I read the more I knew this method would work for me.
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,
Around 10 years ago I was diagnosed with chronic illness. Both M.E and Fibromyalgia and more recently diagnosed with Joint Hypermobility. These illnesses have changed my life dramatically . I have learned to adapt the hard way.
I had to give up working as a Driving Instructor and my OH then became the main breadwinner.
M.E and Fibromyalgia affects my life daily, without fail it is ALWAYS there. The only way to describe it to others is RELENTLESS!
Walking normally feels like walking in a swimming pool, and every morning I wake up feeling like I have just gone 10 rounds in the ring with Mike Tyson. In short just think ‘proper’ flu without the head cold and you are on the right lines.
That’s before we even get started on the pain levels throughout my body and more recently in my hands and ankles (due to the Hypermobility). Everything hurts……………..all of the time, with no respite!