Monday 29 May 2023

M.E. Q&A - Questions from Instagram followers

What is the one thing M.E. has taught you?

Who my real friends are. I’ve lost a particular friend who I thought was “my person” (something from one of my favourite shows Grey’s Anatomy) but it turned out they wasn’t the person/friend I thought they were. Now though I feel as though I’ve found ‘my tribe’. A group of amazing people, pen pals and friends who I feel are a positive influence within my life and on my social media. I feel I can turn to these people, talk to them, talk to them, turn to then with my questions or for advice, have a rant or a ramble or just talk about the things we have in common which has nothing to do with medical stuff. For example books, pen palling, crafting, pets, home decor and much more. These people also fill my Instagram with positive things (and funny animal videos!)

A lot of ‘my tribe’ also have chronic health problems/disabilities including M.E. but we don’t let our health define or beat us but it’s good that in the background there’s that understanding of illness and all that comes along with it.

M.E. has also taught me gratitude. I have a lot of thankfulness for everything in my life big and small. A letter or message from a friend, the enablement from a PA/carer to have a hot bath, drinking a nice cup of coffee, going outside in my wheelchair with my PA for a walk, a hug from my Dad, the fact I’m in my own home (!) these are just a few of many things I am grateful for.

What is the hardest part with M.E.?

Feeling stuck with my life. I’ve been ill for ten years now and I’ve had little to celebrate. I see people around me my own age achieving things like my brother graduating from University, going a masters, getting a job getting promoted and so on and I’ve just gone nowhere at all.

However I now do have something HUGE to celebrate as I’ll soon be moving into my own home! I feel really proud of myself for this as it’s been a difficult journey and I know it will be challenging but there will be so many positives and many achievements.

Loneliness and isolation is also another hard part of having M.E. especially because my M.E. is severe I’m on the whole housebound so I can’t go out and socialise and virtual events are too tiring for me.

What symptoms do you experience with M.E.?

A lot of people think that M.E. is just about feeling tired but it’s much much more than that. The symptoms that I experience vary in severity throughout the day and some symptoms affect me more seriously than others. I also have co-morbid symptoms annd other illnesses that have been brought on by my M.E.

My ‘main’ symptoms I experience include:

🩵 Hypersensitivity, especially to light, noise (and sometimes touch and smell too).

💙 PEM/PENE - Post Exertion Malaise or Post Exertion Neuroimmune Exhaustion - sometimes even the smallest amounts of activity can bring this symptom on. It’s a delayed reaction symptom for me it’ll come on the following day and you don’t know the extent of how hard it will hit you. Basically after exerting myself I’ll feel generally unwell; as though I have the flu with cold and flu-like symptoms and I will feel utterly exhausted and weak and my other M.E. symptoms will flare up too. It can take a few days or a few weeks or even months to recover.

🩵 Payback is a more instant reaction following doing any sort of activity so pacing and activity management is really important. I’ll experience a flare up of symptoms immediately after exerting myself as opposed to PEM/PENE which is a delayed reaction symptom. Sometimes even the smallest amount of exertion such as going to the bathroom can (a) feel like climbing a mountain and (b) it will cause me payback on a bad day.

💙 Pain is a big symptom for me. I feel different types of pain all the time - muscle pain including spasms, nerve pain including neuropathy and intense pins and needles and like electric shock sensations etc, joint pain as well as headache and migraine pain and abdominal pain and co-morbid gastrointestinal problems such as IBS and other issues. My pain is widespread throughout my whole body but my legs are the most painful part of my body when it come to my M.E. pain.

🩵 Persistently feeling fatigued and exhausted which worsens after doing activities including physical activities, cognitive activities or even something emotionally exertive and no matter how much I rest I never feel refreshed from my fatigue.

💙 Sleep difficulties especially for me insomnia - to me I think that when I’m struggling with insomnia it’s because my body doesn’t have enough energy to sleep. I also wake up feeling unrefreshed and often exhausted even when I’ve managed to have a good night.

🩵 I struggle with my cognitive function - this is often referred to as ‘brain fog’ - it involves this like difficulty thinking, planning and concentrating as well as multitasking, difficulties with speech and poor memory.

💙 Flu-like symptoms, poor immune system and generally feeling unwell.

🩵 Autonomic problems - this is problems to do with my body’s autonomic functions. So things like poor body temperature control, poor circulation, dizziness. Orthostatic intolerance is something I really struggle with a lot; I struggle to tolerate being upright for too long and so have to sit especially with my legs out and also sit/lay reclined most of the day to ease my symptoms and prevent me from passing out in the worst case scenario.

Do you have more cognitive or physical energy?

I would say that I’ve always had more cognitive energy but I still have to keep in check what I’m doing and time activities so I don’t overdo it on my activity management and burn out. 

Do you/are you grieving for your old life - how do you cope with this?

For a long time I have grieved for my old life. I’m turning 30 next month and the plan I had for my life isn’t possible anymore which I still grieve for sometimes. I’ve also been academically driven I didn’t have any other life plans other than my education and the career path I’d planned out for my future, so when I became ill and had to leave University and then especially when I realised that returning to education wasn’t possible it was really hard. I really struggled to know where to place myself in the world and I felt stuck whilst the world and everyone else around me still where going places and it was hard especially when I saw people doing the things I wanted to be doing. I didn’t feel angry or envious as that’s not me, I just felt a sense of deep seated sadness and grief for the life I had lost and I felt like that for a long time.

What helped me cope was counselling and talking to a therapist; also friendships as well as just not focusing on the past or the future but just on the day in front of me and getting through that. I tried to celebrate the little wins because to me they were the big wins. I’ve also developed and grew my feelings of gratitude for all the things in my life big and small and that’s really helped me cope and realise what’s important in my life now and to look at what I have to be grateful for rather what isn’t there which is my pre-illness life.

What helps you get through difficult times? What are your go-to coping techniques?

Therapy has really helped me get through difficult things. Friendships are also really important to me especially the friendships I’ve made on Instagram and friends through pen palling - some of my friends also have M.E. and though we don’t focus on our M.E. it’s nice that there’s that understanding in the background.

My go-to coping techniques are:

💙 Anything sensory such as my aromatherapy diffuser or kinetic sand etc

🩵 My noise cancelling headphones along with an audiobook 

💙 Strawberry jelly and vanilla ice cream!

🩵 Letters to/from friends and pen pals

💙 Crafting especially colouring

🩵 Cuddling my heated Warmie zebra ‘Zoë’ (which I got as a gift from the charity ‘Smile for M.E.)

💙 Mindfulness or listening to soundscapes

Are you bed bound or able to move around a little and make it to the sofa and things?

I’m not bed bound but I spend most of my day on my bed as I can manage my M.E best being laid in best and I’m also most comfortable here.

I have a profiling bed and a hybrid airflow mattress so I can adjust my position easier and independently and it’s much better for managing my orthostatic intolerance. These were provided to me by my community Occupational Therapist and nurse.

I can move around like getting to the bathroom and through to my front room/kitchen area which is just a few steps away.

Since I’ve moved to my bungalow it’s been much much better for my mobility as there’s a way less walking required and no stairs to contend with so it’s made a massive difference for me. I really struggled to get around at my parents house and I was very restricted a lot of the time.

My ability to get around also depends on good/bad days. On my good days obviously my mobility is better but on my bad days I’m mostly restricted to my bed just so I can manage my symptoms and be safe and comfortable. I’ll only really move when there is someone here in case I fall as I can be very wobbly on my legs.

Do you get muscle wastage/do you have exercises to do to stop that or help circulation from sitting lots?

No thankfully I haven’t experienced muscle wastage so I don’t have exercises to prevent that from happening. I do some daily physiotherapy exercises to help keep me mobile as ‘if you don’t use it you lose it’ - the exercises are also to help with my other illnesses too. However I have to be careful not to exercise too much as with my M.E. I struggle with exercise intolerance and it can worsen my M.E. If I do too much physical activity of any kind and it causes payback and PEM even if I only do a tiny bit of physio so it’s a fine balance.

I once went through Graded Exercise Therapy (back when it was recommended as a treatment for M.E.) and it made my M.E. become much much worse. 

💙 In a 2019 NICE survey 67% of people with M.E. who did GET became physically worse afterwards.

In terms of circulation I have regular massages with a lady called Hollie who treats people with health conditions so her massages aren’t like spa treatments but more focus on my symptoms so in with my massages one of the things she works on helping my circulation.

Your decision and process of moving to your own home?

My decision to move house was based on two things. The first thing was the fact that I’m turning 30 this year (in a few weeks to be exact!) and I just felt it was time to get my own home despite all the challenges I have with my health. The other factor was that back at my Dad and stepmum’s the house just medically wasn’t suitable and didn’t meet my needs and I was struggling to live there and I couldn’t have the adaptations I needed because it wasn’t my home to give permission for certain adaptations etc. to be installed.

I was worried a lot about the idea of living alone because of my health but I just hoped I’d get the care and support I needed to enable me to live on my own. Thankfully I got the care hours I needed however I’m struggling to find additional PAs so I’m using a care agency at the moment.

The property I’m in now I was actually number 4 for so I didn’t think I had a chance and forgot about it and then a couple of months later I got a call asking if I wanted to view it. I was a little unsure at first because of the lack of storage space and the kitchen space but I’ve totally made it work for me and I’m now happily living here. Some days are really difficult I won’t lie and it’s not helped by the fact that I’m still yet to find additional PAs so my care situation isn’t ideal but at least for now I’m getting to use my care agency that I like as opposed to the not-so-great agencies adult social care use. It’s just a case of waiting and keeping my fingers crossed that a PA will come along asap as in the evening I’m meant to get 1 ½ hours but I can only financially get ½ and hour with my agency. (I pay a contribution towards my care but if I go over budget I have to pay the excess and my agency isn’t the cheapest.)

🩵 A myth is that a lot of people think that when you get your care through adult social care it’s free when actually you have a financial assessment to see how much you should pay towards your care.

Since moving here I’m slowly getting the adaptations I need to live independently. This ranges from the grab rail next the bath so I can sit myself forward on my own I’ve also got one by the back door, I’ve also had a key safe installed and I’m waiting for a step for the back door. I’m also waiting for my OT (Occupational Therapist) to bring me things like a perching stool and I’ve bought other adaptations myself.

I chose to get social housing as there was more security and the rent would be lower plus I’d be able to adapt the property. I couldn’t really imagine a private landlord wanting their tiles being drilled into to fit a grab rail. I’ve had support from a housing charity so I’ve had a housing support worker every step of the process. They set up my profile with the council to bid on properties. Medical evidence was submitted and I was instantly put in the highest band based on medical needs as my current property wasn’t suitable for me. Both me and my support worker was surprised I’d been instantly put in the highest band but it did make things easier as when I bid on properties I was more eligible for them. I was only able to bid on properties I was eligible for however after a while I made myself eligible to also bid on properties reserved for older people based on my medical needs so this did mean that there where more properties open to me that I was eligible to bid on.

Finding a new home wasn’t easy as most one bed properties where I live all had wet rooms. Because of my hypersensitivity with my M.E. showers make me feel like I’m in a super charged jet wash which is really physically painful plus I get cold easily in showers causing my muscles to go into spasm causing me more pain.

I had a total nightmare with the wet room situation (long story) but basically it felt like the assumption was that all elderly or disabled people needed or would need wet rooms so even when a property was advertised as having as a bath (perfect for me) whilst it was vacant a wet room would be installed or the advert would be out of date.

I hope that’s answered the question about the process of moving - I was a bit unsure how to answer that question such as how much detail to go into and give.

Sunday 21 May 2023

M.E. Guest post by Katie

A young female adult with long blonde hair wearing a go,d necklace and a back and white top
I'm Katie, I’m 18 and living with Very Severe M.E. I live my life in one room, always in my bed. Not leaving it for months at a time. Everything, literally everything, happens from here. 

As you can partly imagine it affects all aspects of life. Although I’m not sure you can know just how much. 

I first got properly ill at 13 and from there have lost more and more of my life and being. My friends. My education. Hobbies. Sports. Joy and happiness. My identity. And the experiences you could expect a teenager to have. Parts of my family have drifted as they have been forced apart by lengthy hospital stays and the requirements of my care. Family who live further afield and can’t visit nor can we. And guests in the house are far too much for me to cope with. It isolates not just me but my whole family. 

There is not an inch of my life or how I live that M.E. has not affected. The more I lost the ability to go to school the more I lost my friends. But that was on them and their choices to start with. Teenagers argue and fall out anyway. And then when we’re ill we’ve pretty much all experienced accusations of faking. It’s a hard combination. I’ve wondered why I either wasn’t good enough, what my illness changed for them, or how they didn’t know me well enough to know I was always wanting to do everything I could. The same when it comes from relatives or beliefs it’s in our heads, exaggerated or made up. All those ridiculous things we are told. 

It’s heart-breaking when the people we trust don't trust us, that we are doing our best and know what we are saying. Don't believe in us. Relationships are ripped apart by this. And they have a lasting effect on us, what we perceive as our self-worth and new relationships. And it happens a lot. 

Aside from that even those I’m still friends with and would love to talk to or see I’m unable to due to my health. It has gradually trapped me and hidden me away more and more until it’s like I have ceased to exist in the outside world. Neighbours never see me leave the house, because I don’t other than in an ambulance, school people haven’t seen me there in years. My school years have passed now with no qualifications. I’m housebound but can’t even interact with my whole household. No family dinners, movie nights or outings. 

My identity was my passion for drama, education, and having fun with friends. My love of riding horses, hockey, the sunshine and outside. Enjoying shopping, dressing up and doing my hair and makeup. Spending time with family, young cousins and family friend’s children. Always being busy and having something to do. I miss it all hugely and have gone through so much grief as a result. 

But I have gradually gained a new identity, new friends, and new joy. My life is so unbelievably different but despite the horrific symptoms it’s not all awful, there are small pieces to find in the mess of it all. And perhaps my identity now is more meaningful. My identity is my writing and voice about this illness and experiencesr. It is the strength it has taken to get through these years and be here. It is the power when I stand up to health professionals and fight for what I need. The ability to advocate and metaphorically stand strong. But it is also my strength in my weakness. The tears I’ve shed and the support I’ve needed. Learning to be vulnerable and rely on others, be a team. 

And when I say everything happens from bed that includes some nice things. Crafting and starting my own little small business, yes, I need a carer to help but it’s something I never did before. And creating my platform and sharing my story. 

My friends are powerful sufferers of this illness who are better than the ones I’ve lost. I’ve known true support and care. I am in awe of them and their strength. Reminded every day why I write and why I share on social media. I’ve created stronger bonds with some family due to the level of care and interaction. M.E. and all it comes with has ingrained itself into my life in a way that will last long after this illness does. Some may take this to say my illness is my identity. Or the idea that we want to stay ill for some unknown secondary gains. It’s not. It’s just affected everything including my identity. Perhaps it’s not even the illness but just me. I’ve changed my identity as I’ve adapted to my situation. 

My life has drastically changed because of M.E. But I’m Katie, currently 18 and suffering, and I believe I will get to live again one day.


Katie raises awareness of M.E. and her lived experience of the illness on her Instagram account @katie_andm.e