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Illness, Self Care, and Self Neglect!

Last updated: March 2022

I should be the queen of self-care by now. You would think so, wouldn't you? But I'm not... I'm human and I struggle with a lot of things.

My mental and emotional health is one of them. It's when my physical health starts to break down... That's when the sh*t hits the fan, so to speak.

Battling on multiple fronts

The whole of last year was a write-off, health-wise, for me.

I had never felt so unwell and for such a long period of time. It was debilitating. I couldn't look after myself. I had no appetite at all; I lost 2 stones [28 pounds] - silver linings I suppose.

I was sick on an every other day occurrence. My husband, Tim, works full time so very often it was just me and Sherlock, our chocolate lab, snuggling together.

I was spending my time between my bed and the sofa. I have so many health-related conditions, I never really know which medication is giving me side effects, or is it a "flare-up" with the Erythromyalgia? The Lupus? Is my heart ok?

I have been very breathless when plodding along at home. There seem to be so many things to think about. Which condition could be causing me to feel like this?

An uninvited rash: The joy of joys

In July, a mysterious rash appeared all over my body.

It started on my legs and then spread everywhere! It stung a little, and although it looked horrific, it didn't really hurt, hurt. I could feel it but it wasn't that painful until it spread to my face, neck, and upper body.

Then my body was on fire. It felt sore and very uncomfortable.

The butterfly rash appears

The classic "butterfly rash" of Lupus appeared, on my face followed by lots of raised bumps and spots. I was not looking my best and have never felt so unwell, all over. My eyes would blur for a few days at a time as well. So thankfully I couldn't see how sh*t I looked.

I obviously had called for advice and due to Covid, they asked me to send photos to them. I explained that I had tried taking an antihistamine or 3. I hadn't changed any washing powder, bubble bath. I hadn't tried any new foods or drinks and so on.

So they gave me stronger antihistamines to try. With each day that passed, the rash got more painful, more uncomfortable and I felt incredibly unwell.

All I wanted to do was to sleep

It took 3 online general practitioner consultations and a blood test before the health professionals finally saw what state I was in (in real life - not photos) and they were horrified!

Eventually, we reached out to my private rheumatologist and I was diagnosed with SLE Lupus... On top of all the other health conditions.

Tackling basic needs amidst diagnosis

I experienced how incredibly difficult it is to take care of your own basic needs when you become unwell for a period of time. I didn't have the energy to even wash or bathe myself. I became a little gross.

It wasn't because I didn't want a bath. I really wanted a bath, but by the time I made it upstairs, my energy had gone, zapping any strength I had. I just had to lie down.

Poor appetite

I had no energy because I wasn't eating. For three reasons: 1, nothing tasted nice; 2, I just didn't feel like eating or drinking for that matter. I was lucky if I could manage half a cup of tea. Three, it was I who ordered the weekly shopping online however, when I was at my worse even that was far too energy-consuming.

I knew I had to try and drink, to stay hydrated. I know the body can cope without food and, to be honest, this body has about two months of reserved fat so I thought I would be ok if I just kept sipping water.

The problem was that no one had bothered to brief my stomach on what was going on. Sometimes I would sip water and it just wouldn't sit right.

That water would find its way back upon seconds and usually bringing more up with it. Other times it felt so delicious to feel the cool, smooth water swish in my mouth.

Everything is moved aside

Everything gets thrown out the window when you are chronically ill. Your medication routine ends up all over the place, you have no idea if it's Monday or Saturday or if it is night or day - we have fabulous blackout curtains.

The great skank of 2021!

I didn't wash or bathe. I managed to do my teeth and I think I wore the same kaftan and knickers for 3 or 4 days.

It wasn't because I didn't want to feel refreshed and clean it's just that there was absolutely no energy that I could tap into to help me manage that.

I had been running on empty for a while now and there was nothing left.

Disrupted stoma routine

Another thing that I soon discovered was that because I wasn't bathing, I wasn't changing my stoma bag. I felt so unwell that felt like such a big mountain to climb. I could barely sit up for 5 minutes without wanting to lay back down.

I usually change my bag every other day. Sometimes if I am busy, I may wear the bag for 2 or 3 days. But being unwell and incapable, I had to keep the bag on for longer.

In the beginning, there were lots of wet beds at night, purely because I wasn't in my life routine, which in turn then affected my bag change days.

This very quickly resulted in the skin around the stoma area, breaking down and turning sore, eventually leading to open wounds - ouchie! It was painful.

I have bathed the stoma area and changed my bag, every other day for around two weeks now. I am pleased to say that it is healing greatly.

Battling the chronic fatigue

My immune system was low and I felt run down, exhausted - just trying to survive day-to-day. This wasn't living. Can you see how being unwell for a period of time, in my case months, had started to have such a huge negative impact on my life?

Trying to keep appointments to see consultants [doctors] was near on impossible. I felt too unwell to travel anywhere. I felt overwhelmed by all the questions they would ask and I didn't know if I could explain everything. I just wanted to be left alone, snuggled with Sherlock.

If I wasn't attending my appointments or seeing my consultants, I wasn't getting better. Bone scans, ECGs were all postponed. If I wasn't eating healthy, nourishing foods then my body had no fuel to help build up my immunity. If I was missing some doses of medications, that certainly wasn't helping me.

It was all a massive vicious circle.

The toxic positivity doesn't help

You really do but there comes a point when even positivity doesn't help. Of course, I want to feel better. Of course, I want to spend time with my grandsons. Going out for a meal with Tim. Living and creating a wonderful life for us. And I really want all of it!

I just didn't feel well enough and it broke my heart.

What do you do when you feel so unwell that looking after yourself is simply impossible?

We know that everything changes and evolves, nothing ever stays the same for too long.

I am also a great believer that we can help to heal our bodies. I have started listening to 'high-frequency music' over the last few weeks. They say it can help with illness and stress so I am giving it a go. Anything is worth a try, right?

Ask for help

I'm the worst person in the world to ask for help. I give help freely to others but find it so uncomfortable to say the words "Can you help me, please?"

Half of me feels like I have given in and the other more sensible side knows it is for the best.

I should allow myself to acknowledge the impact of all these illnesses on my body. Separately they are enough to change how I live my life and collectively they have the potential to take it too!

Things that Tim did to help

  • He made a flask of hot tea/coffee so if I didn't feel safe to make one using the kettle, I could still have one.
  • Fresh water bottles - hydration, hydration, hydration!
  • Sick bowl - a must for anyone unwell.
  • He would leave all the remote controls for TV, DVD, fans nearby so I wouldn't have to get up.
  • Writing pad and pen in case inspiration hit me!
  • Keeping the phone nearby - for obvious reasons.
  • Dry crackers in case I got hungry. Plus some biscuits, fruit, and sometimes a sandwich.
  • Sorting out my medications and using post it notes for when I must take them.

I am so grateful for everything he did for me.

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