It has been a few weeks since my last blog post, but I am back hoping that this week is going to be a better week symptom wise. The last few weeks have been an endless cycle of condition and symptom flare-ups, to a point where I do not know anymore which condition is the cause at any one time.

This has inspired my blog post topic for today – The Difficulty of Living with Multiple Chronic Illnesses. As all of us know living with even one chronic condition is a tough battle, but living with multiple really sends your head into a spin. This is for many reasons from the fact you never get true respite from feeling ill – as once one condition calms down another or others start to flare-up – to having specific symptoms from each condition fight against each other to make you feel that much worse or bring that much more intensity.

This is made much harder when you live with polar opposite conditions. Essentially conditions that require very different self- management techniques to get by. I personally find this so draining and confusing and often find myself in positions of fundamentally having to choose between which symptom is affecting me more in that moment in time, and therefore having to decide which symptom to tackle or ignore.

I thought I would share with you today the top issues I face with opposing conditions and demonstrate just how my multiple chronic illnesses interact with each other.

Dilemma Number 1 – Body Temperature Issues

My first dilemma is how to regulate my body temperature. Living with Raynaud’s I find I am freezing cold the majority of the time, no matter what I wear or what I am doing. My hands and feet generally tend to be like blocks of ice – my circulation is awful. I am cold to the touch and at times this can sink into my bones. Yet, living with PCOS and other menstrual problems I can encounter deep internal hot flushes which can leave me feeling faint and nauseous. My internal body can be boiling whilst my physical body is freezing making simple tasks such as showering or deciding what to wear a nuisance.

Dilemma Number 2 – Managing Fatigue

Fatigue, exhaustion, absolute pain in the ass – what ever you want to call it – has, is, and will always be my number one nightmare symptom. There is nothing worse than feeling so weak you cannot complete simple every day tasks. Every single one of my conditions has fatigue connected to it, yet they require me to deal with it in very different ways. ME, Fibromyalgia, UCTD, and PCOS all require me to pace, rest and slow down. However, Tourette’s makes that near impossible at times. Holding tics in makes my Tourette’s worse so I need to get them out, I need to move, I need to be frantic, I need to throw my hands and legs, I need to walk – all of which is a contradiction to my other conditions and how it is advised I manage my fatigue levels.

Dilemma Number 3 – Pacing

This dilemma is more of a physical vs. mental dilemma. My physical conditions all require me to pace my days to try and prevent flare-ups in my symptoms. To stop me having those crash days several days later where I cannot do anything of any use other than exist. Yet, as someone who has experienced mental health problems I know how important it is to keep my mind active and to live in the moment. And I guess sometimes to feel like anyone else. Pacing sometimes stops me doing this, it makes me have to plan, to analyse, to weigh up whether it is worth it. It makes me have to choose what matters more – physical or mental wellbeing?

Dilemma Number 4 – Exercise

Exercise is a real ‘I don’t have the answer’ scenario. It is no secret that in the world of ME exercise can make you feel worse and in my personal case this is very true. I find it brings on flares of extreme exhaustion and bouts of nausea and dizziness and can wipe me out for huge amounts of time. However, living with Fibromyalgia it is important to keep my muscles supple, and living with UCTD to keep my joints moving. If that wasn’t enough living with PCOS, weight gain is a lovely unwanted symptom, which of course isn’t helped by lack of movement. Finding a balance is near impossible and at this moment in time the ME exhaustion is kind of taking the reigns.

Dilemma Number 5 – Sun Exposure

This dilemma is one of the most difficult dilemmas I have faced this year for a whole host of reasons. Predominantly because like with many people with chronic illnesses (and people in general) I need vitamin D. In fact a few years ago I was so low in vitamin D it was deemed a significant problem. This was rectified by vitamin D supplements, that was until I developed hypercalcemia and had to stop them. This has meant getting outside in the sunlight has been crucial to stopping my levels dropping again. Getting outside has been difficult for me anyway due to condition flare-ups and a small thing like a pandemic, but now my UCTD has made this an even bigger problem. Developing UCTD I have to be careful to sun exposure and have to be protected at all times – in a nutshell I have to stay out of the sun. Note to self – need vitamin D – but cannot take supplements – and cannot get in the sun – right, got it, amazing!

Here we have my top 5 dilemmas when living with multiple chronic illnesses. The reality is we are all living with a variety of conditions that affect us all in very different ways, so we will never be like for like with each other. I wonder how many you can relate to, or if you have any of your own.

Sarah xx