Sunday 5 May 2019

#meandmyME Week 1

Wednesday 1st May // Day 1: My background and M.E.

I'm 25 and I was officially diagnosed with M.E. on July 4th 2017 (to be precise), though my symptoms had been going on for several years before. 
When I got the diagnosis of M.E. it was like a weight had been lifted and I could finally stop being annoyed and frustrated with myself and my body, and wondering questions like "Why am I so tired all the time?"; "What is it that I'm doing so wrong for my body to behave like this?!"; "What can't I just snap out of feeling like this?!". 
As well as having M.E. I also have other disabilities/chronic illnesses as well as co-mobid illnesses. 
I enjoy arts and crafts whether it be crochet or decopatch; I'll literally give anything a go. I also enjoy writing letters and have a giant notice board next to my bed for all my mail and when I'm in my bedroom it never fails to make me smile and remind me how loved I am. I also like baking, I especially love making banana muffins, fairy cakes (I like decorating them) and carrot cake butterfly cakes. 
Before I became ill I was at University studying nursing, I hope to one day be well enough in a "differently normal" way and return to University to study 'Creative Expressive Therapies'; my end career goal still remains the same and I hope to one day become a Child Psychotherapist. I've always wanted to help children and young people and support them to get the best start in life as possible.
Although my health has taken a lot away from me and my life hasn't worked out as I planned I try to remain positive as much as possible and my word for this year is 'hope'.
To help me with my FND and M.E. I'm hoping to go to neuro rehab.
M.E. (and my other illnesses) and becoming a young person with a disability has completely changed my life upside down. I've gone from being an active person regularly going to the gym to just getting from the sofa to the kitchen being exhausting. I live with constant unpredictability and having to constantly weigh-up how to spend the precious little energy I have each day.

Thursday 2nd May // Day 2: Symptoms

I have some M.E. some that remain constant and then I have episodic symptoms and then there is the PEM flare-ups. This is just a brief summary of my symptoms.
  • I live with chronic fatigue daily, some days I can push through it (and deal with the payback later) and other days I spend most on my day just sleeping/resting.
  • PEM (Post Exertion Malaise) also goes with the fatigue. Sometimes is going on soon after an activity; other times it takes 24-48hrs to properly kick-in.
  • Muscle and joint pain is another big one which ties in with my FND and hypermobility.
  • Sleep problems too; despite the daytime fatigue and napping I can be a total insomniac at night time or have broken sleep and most mornings I wake up more tired than when I went to bed. I can also have 'sleep several' where I can't get off to sleep until the early hours and then I sleep all morning.
  • Headaches and migraines are near daily.
  • Brain fog/cognitive dysfunction - where you brain is is in slow moving mode and your memory and concentration is pretty much non existent at times. This can have a knock-on effect with speech difficulties like forgetting words and getting words mixed-up. Difficulty concentrating and focussing and organising my thought process.
  • Most days I feeling flu-like to some extent and I have frequent sore throats and swollen glands and I'm prone to viral infections.
  • I'm very hypersensitive, especially to light, sound and certain smells to the point where is can be painful or induce a migraine. I wear tinted lenses/sunglasses and often put on headphones or ear defenders and eye masks to reduces sensory input. My Dad also installed a dimmer switch in my room so I can control the amount of light when I'm laid in bed. Some days I need total darkness.
  • Chronic pain, this also goes with my other illnesses, pain is often widespread and can be in my joints, muscles or nerves.
  • Dysautonomia inc PoTS, difficulty with the automatic nervous system (ANS), this can include symptoms like poor temperature control, dizziness, heart palpitations, poor circulation etc.

Friday 3rd May // Day 3: I am... (despite my illness)

Creative, a blogger/vlogger, make-up and nail polish applier, nature lover, artist, activist, campaigner, board game player, letter writer, friend, and a big tea and coffee drinker. 

Saturday 4th May // Day 4: Average day

Most days I wake up between around 9/9.30pm depending on whether I have any appointments or what time my carers are due. It will usually take me about an hour to fully become awake for 10am meds and then I'll either get up or go back to sleep. 
Once I'm awake I slowly elevate myself upright (I have an electric mattress elevator) - slowly sitting myself up avoids my POTS gong a bit haywire; once I'm sat up I then sort out my tablets for the day into my alarmed pill box (as otherwise I'd forget to take them) and take my tablets though I try to remember to do my meds a bedtime for the next day in case I wake up with bad muscle spasms in my hands. 
It normally takes me about an 30 minutes to an hour from waking up to getting out of bed.
I then get something to eat and spend until about 1/2pm getting myself into 'day mode'. Sometimes if it's a bad day after having/making breakfast I will go back to sitting/laying on my bed or even going back to sleep.
(Obviously if I have an appointment I may need to wake up earlier to give myself enough time to get into day mode and dressed ready for the appointment.)
I will then get dressed. I wash 1-3 times a week - just sitting in a shallow bath unless I have the help of my carers to have a 'proper wash' in which I will go all out on shampoo, hair mask, face stuff, body scrub etc!. Some weeks I can go without having a proper if I don't have the energy - baby wipes and dry shampoo are defiantly good for freshening up. My carers or my Dad wash my hair for me. 
I will then spend the rest of the day napping, watching TV, doing admin stuff like booking patient transport, doing crafts, writing letters, listening to audiobooks/the radio, blogging etc, it all depends on my energy levels, seizures, if I have appointments that day/next day, pain, PEM etc. 
I often find trying to do something takes my mind of the pain and symptoms helps. 
Because of my falls and seizures during the day I usually sent myself up in one place and stay there, wether it be the sofa (upstairs on or downstairs) or my bed.
On a good day I can pace myself get things done, even from my bed. On bad days I just lay in the dark with my headphones on playing an audiobook on the lowest possible volume.
Especially because of my other illnesses my health/life is pretty unpredictable.
I try and get my appointments in the afternoon when I'm better functioning and I have to plan resting around appointments.
To help me with my sleep routine, especially because I struggle with sleep difficulties (despite the chronic fatigue during the day - ironic I know!) - I put on my aromatherapy diffuser, get into my pj's, put on some 'sleepy' moisturiser (it a lavender scent and from Lush), drink some herbal night tea, take my night meds, put on an audiobook and settle down. I've put timer settings on my phone so it automatically goes on 'do not disturb mode' and times me out of certain apps.

I try and stick to a routine during the day and at night as much as possible.

I am mostly housebound; I mainly leave the house for appointments (some appointments are done over the phone or at home to make it easier for me) and if I do have to travel I travel via patient transport - local appointments I travel in my wheelchair and for long distance appointments I travel on a stretcher.

Also when I'm well enough and I have nothing else that day and following day and the day before and it's a day I have my carers I go out with them such as to go shopping or to post letters and then I rest/sleep when I get back home. This gives me a bit more independence as opposed to relying upon Mandy to pick up my toiletries when she goes shopping.
When I'm out and about I need my wheelchair which helps conserve my energy levels and pain.

Everything takes energy and I have to be careful so as to reduce the PEM payback.
(I started writing this #meandME series of posts last year; slowing writing bit by bit what I want to say for each day.)

Sunday 5th May // Day 5: Statistics*

  • M.E. stands for Myalgic Encephalopathy
  • The World Health Organisation has classified M.E. as a neurological disorder since 1969
  • Genetics may play a role in M.E.
  • M.E. affects more women than men
  • It most likely affects people between the ages of 20 and 45, though is can affect anyone of any age including children and young people.
  • M.E. affects an estimated 250,000 people in the UK
  • Worldwide, there may be as many as 17 – 24 million people with ME/CFS
  • Not everyone will experience the same symptoms so it's important not to compare someone who has M.E. to another person who has the illness.
  • "Unfortunately, ME/CFS has had only about £10m in research funding in the UK since 2007, with just a fraction invested in biomedical research. As a comparison, multiple sclerosis has received seven times that amount, yet it affects fewer than half as many people (100,000 in the UK)."


Association for Myalgic Encephalomyelitis     
The Times Newspaper
Action for M.E.   
Invest in M.E.    
American Myalgic Encephalomyelitis and Chronic Fatigue Syndrome Society