Myalgic Encephalomyelitis/CFS Symptoms and What Helps me

Myalgic Encephalomyelitis/CFS Symptoms and What Helps Me 

Over the past few weeks I have had a difficult time with my illness here is my real-life description of my Myalgic Encephalomyelitis/CFS Symptoms and What Helps Me. The pain takes over the whole of my body every single muscle feels like it is screaming in pain with me, and every part feels like it is working against me. Laying on my left side always seems to be the least painful, I must stress that again it is the least painful but every single part of my body still hurts. A medical professional always asks you to give them a score from 1 -10, 1 being the least pain and 10 being the worst pain you have ever experienced, laying on my side brings the pain to a 7.

Pain gets too much

When I get like this every function hurts, I can’t talk noise hurts me physically, and light causes immense pain so my life is spent in a dark room with no sound. The ability to even think seems mismatched, and I cannot think straight. It sounds awful to say but I know how much pain it will take to go the bathroom so I will hold in going for a number 1 for the longest time, this itself will cause additional problems as your body doesn’t function well if you hold your urine for such a long time. I can’t eat at times like this as the pain leaves me with no appetite but even if I do feel hungry lifting a fork or my arms going up to my mouth is too much pain so I have to rest in between bites as your jaw aches or bringing your food to your mouth becomes too much, it’s like a disconnect from your brain to your arm you want your body to do the action but it doesn’t happen your arm feels like it gets heavier.

Dry mouth

Not eating or drinking leaves your mouth dry which is never a nice feeling or a pleasant taste so I try to position my drinking bottle so I can keep my straw in my mouth leaving me to take in water when I feel able to. I learnt very early on that I needed to use a bottle or cup with a lid as I would spill drink over me or drop cups to the floor. Unfortunately, I do still drop things a lot and the laminate flooring at the side of my bed looks awful.

Myalgic Encephalomyelitis /CFS Symptoms and What Helps Me -I have to take medication every day to help manage my pain.

Morning

In the mornings I take 40mg of Zomorph this is a slow-release capsule and I take this twice a day 12 hours apart. On top of Zomorph I take Gabapentin, Mefenamic Acid and Propranolol, the Gabapentin helps manage the pain and the propranolol helps me manage my anxiety.

At LunchTime

I take Gabapentin, Mefenamic Acid and Propranolol again. On top of my pain medication, I take Omeprazole as I suffer from severe acid reflux.

Evenings

I take Zomorph 40 mg Mefenamic Acid, Gabapentin, and Propranolol again but we add Amitryipline, Duloxetine and Hydroxyzine.

These tablets help me get to sleep and in most cases stay asleep as I can get very itchy with extremely severe hip and pelvic pain, being itchy and not having the ability to itch is torture within itself but when I am really bad I just do not have enough energy to scratch, I do have an extremely large scratching tool which is useful at times but a lot of the time I use controlled breathing and the power of my mind, sounds silly but it helps. I must stress that this does not take the itch away but focusing my mind to stop me scratching the itch can work for me. I also have Oramorph for breakthrough pain.

I learnt this early on

One thing I learnt early with this illness is to try to do the minimum on regular tasks so I can conserve energy for things I enjoy doing, this could be watching tv with Graham when he gets home from work or giving Alfie a butt scratch which makes his little tail wag with happiness.

Myalgic Encephalomyelitis/CFS Symptoms and What Helps Me – One of the first things I bought was walking sticks when I was first diagnosed I found walking extremely tiring so using a stick helped me maintain a little energy as the sticks helped keep me upright. As this later led to using crutches and then buying a wheelchair I was still able to spend time with my family. I felt self-conscious and worried about other people’s options in the beginning, learn from my mistake please don’t ever be afraid of investing in something that will make a difference in your life if it helps you then it doesn’t matter what anyone else thinks.

Technology

Using crutches or a wheelchair within my home meant I needed to make changes in doing the simplest things like putting on the lights as using crutches within your home needs light to see where you are going as a crutch slipping on something wet could mean a fall which is the last thing you want.

Philips Hue

So I invested in Philips Hue lights within our hall lamp downstairs and on the lamp in the hall outside our bedroom as well as our bedside lights. So with the help of Siri on my phone or Alexa throughout the house, I can now turn on our lights using my voice. I can also set the lights to come on at a certain time or sunset, this helps with security too as this is something that worries me a lot.

Google Nest

Our central heating and water control was in the kitchen when I got ill so if I was home alone I would have to go downstairs to put on hot water for a shower or to turn on our heating. So we had the Nest system fitted so now I can control the heating or water on my phone or use Alexa or Siri voice control. Myalgic Encephalomyelitis/CFS Symptoms and What Helps Me – Upgrading technology at home made a huge difference to me mentally as it has helped me stay independent even if it is just to turn a light on myself. It may not seem a lot to many but repetitive actions like putting on a light or turning it off when you leave a room means stretching from my chair or having to balance one crutch if I am using my crutches using technology means that I can conserve that energy to do something that makes me feel a little more like me even if it is to watch a rerun of “not going out” with my Hubby.

My Essentials

For safety, my occupational therapist insisted on having a second bannister installed on our stairs. This was referred by The ME Team at Broadgreen Hospital, the therapist spent a long time with me going over the things I do and how I could stay safe while conserving energy and depending on my home they may refer other things.

Don’t do what I did

I admit that I pushed back on a lot of things as it made me realise how ill I am and that was difficult to deal with in the beginning. From my bed I wanted to be able to be sat up straight or propped up to watch TV or read a book so they arranged to have an adjustable back rest to be delivered to me.

Huge Help

I also had a mattress sent to me which helps relieve pressure points this gave the additional benefit of not having to push up from a sitting position ( I hope that is understandable, it means that when I put my feet on the floor they are in a natural position as I am not too far down as the bed is the right height now ). As my bed frame is metal I use them for support when I need to go to my bathroom within the bathroom they arranged to have a toilet support so I did not have to rely on the sink for support when I stood up from the toilet. The next thing they arranged was to have a stool for the shower, I can not recommend this enough, even if you do not think you need it and you get tired as the day goes on having that place to sit while I get clean makes a huge difference.

Spoons

If you haven’t already read the spoon theory here is a link https://www.youtube.com/c/christinemiserandino. Christine was able to put into words what so many of us tried to say. While you may not think that you need a lot of things or adjustments to live life with ME or any other illness that makes you exhausted please speak to your GP or your ME Dr in some cases you can even refer yourself to your local council. If having a shower takes 4 ( just an example ) spoons, having a shower sitting down on a shower stool might only take 2 spoons or not having to go downstairs to put the heating on would save you that spoon, not putting lights on when you go into a room or when you leave the room would again save you those spoons. All of this would save you energy throughout the day allowing you to do something you want to do, this alone could make a huge difference to your mental health.

Life with any illness

Myalgic Encephalomyelitis/CFS Symptoms and What Helps Me – Living with any illness is hard when I first got ill I went through some extremely dark days as this illness was taking everything from me and the worse I got the more it took. I went from a Mum who was working full time, going to the gym, and being able to spend time with my family. At the weekend we had amazing friends and a fantastic social life having that all taken away, I even needed help to go to the bathroom as I couldn’t do anything for myself. The more I pushed against it the worse I got I would be alone all day in a dark room in immense pain all day every day, I missed out on so much and I didn’t want to live like that.

Topping up the Dopamine and serotonin tanks

Now I survive and I do everything I can to help save even half a spoon to do something on my terms which means that I can FaceTime Becks ( sometimes I don’t even talk I just listen to her ) even if it is a cuddle with Alfie but being able to do that after a bad day or week makes a huge difference to my mental health, I look at it like topping up the Dopamine and Serotonin tanks.

This illness has no cure and you can try to fight it with everything you have but it will win, I know that from experience. So do all you can to accept this illness on your terms, invest in anything which will make a difference to the energy you use, ask for help from your GP and work with your local ME team.

I have listed some of the items that I have purchased which make a difference to me if you need help please email me I am always available to help, I may not get back to you straight away but I will get back to you.

Amazon Best Buys

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