#MEandMe: Week 4 (and a few days)

Saturday 23rd: Today I feel...

Happy...
I spoke on the local BBC radio (recorded yesterday) about M.E and I've recently done some work with Action for M.E

Sunday 24th: Happiness

💕 Cuddles with Flop

🖌 Being creative

✉️ Receiving a letter from a friend

🌺 Fresh flowers

☕️ A nice cup of tea/coffee

☀️ Sitting in the sunshine

💆🏻 Having my hair braided

💅🏻 Doing my makeup and nails

👭 Sending time with friends and family

🌈 Helping and supporting others

Monday 25th: Friendship

One of the things that I've learnt since becoming ill is that over time you learn who your true friends are. Over time I've had friends that have left me, friends who have stuck by me and made new friends too.
One of the things my Dad once told me is that the older you get the fewer the friends you have but the better those friends are and that's so true.
The friends I now have though only a small number I know I can count on them to be there for me like I am there for them. Some friends also have chronic illnesses and we can talk about how it sucks to be ill and what comes from being ill but equally we can talk about non-health things too and that balance really matters.

Tuesday 26th: Quotes that help me

"There are things that are possible, Things that are impossible, But otherwise, I think that within my restrictions nothing is impossible. Imagination is another name for absolute power." - Impossible Shoes

"Carpe Diem"

"Just keep swimming, and if you can't swim just float" - Ruth Spurr

Wednesday 27th: Something positive

The support that I get from my friends and pen pals. I love hearing from them either on my phone such as through a text or a letter in the mail. I might not have many friends but these are the people I can rely upon and who are my true friends who haven't given up on me just because of my health. Those friends I can talk to about anything, the good and the bad. Some of those friends have health problems themselves and I can talk to them about that as they have a better understanding, often more than healthcare professionals. Equally I can talk to my friends about non-health things as even though or health at times dominate our lives we are still more than a list of illnesses and it helps to talk to my friends about non-health things as it reminds me of all the other parts of me. 

So to my friends out there who are reading this, thank you.

Thursday 28th: Words for someone newly diagnosed

• Getting a diagnosis may feel like a weight has been lifted as you now finally know why you feel the way you do, but equally it may be difficult to know that there is no cure.
• It may take some time to get your head around everything and that's okay.
• You may lose some friends; you may make some new friends but you will find out who your true friends are.
• M.E is no an easy illness to have and at time you may feel like you are not being listened to, but I believe you.
• Listen to your body and give it time to heal. You know yourself best.
• I would recommend checking out M.E charities like Action for M.E and the M.E Association for help, advice, information and support.
• You will have bad days and equally you will have bad days; then there will be the days where you don't feel like you can carry on anymore. And that's okay. It's okay to not be okay. Most importantly of all is to hold onto hope.

Friday 29th: Most difficult aspect of having M.E

There are many difficult aspects of living with M.E; but I would say that the most difficult aspect of having M.E is the invisibility.
My symptoms and how my body physically feels cannot be seen - the brain fog, pain, exhaustion etc. The impact it has on me emotionally and socially. How I can go long periods of time seeing very few people and feel so isolated from the outside world. How people judge me because they can't see my disability.
M.E is so invisible to others, but to me it's not because I live with this body 24/7/365 and non of it is invisible. I would just love someone to spend just a day with M.E.

Saturday 30th: Most positive aspect of having M.E

Living with M.E is by no way a positive experience in all honestly it sucks in so many different ways from waking up in the morning more tired than you went to bed right through to being in so much pain at bedtime that you can't get comfortable to sleep. M.E has destroyed my life in so many ways and turned my life upside-down and ruined so many dreams and plans. Yet it's also brought positivity.
I've learnt a lot since becoming ill such as the people in my life that really matter and that I can handle much more than I thought I could and illness has brought me closer to my faith and myself.

Sunday 31st: Dreams and ambitions

My dreams and ambitions used to focussed around my career and that still the case but I've learnt more to live within the present and so my dreams and ambitions at present are more about trying to stay as well as possible and work on my rehabilitation so I can one day travel or return to education.

#MEandMe: Week 3

Saturday 16th: Myths and Facts

Myths

• M.E is just about feeling tired a lot
• Another name for M.E is 'yuppy flu'
• M.E is just 'all in your head'
• Sleep improves the feeling of fatigue
• You're just tired because you're anaemic
• M.E only affects adults
• But you don't "look" sick
• Exercise and CBT cures M.E
• M.E isn't a "serious" medical condition
• M.E is caused by stress
• There isn't a treatment for M.E
• There is no test for M.E
• M.E is caused by depression or anxiety

Facts

• M.E is classified as a neurological condition
• It is multi systemic meaning it affects different parts of the body
• In the UK M.E affects 250,000 children and adults
• M.E affects more women than men
• 1 in 4 people with M.E are severely or very severely affected
• M.E is classified on a percentage scale from mildly affected - 0% to very severely affected - 100%
• M.E has contributed to or caused the deaths of individuals very severely affected by M.E
• Some research by the M.E Association has found that in some cases M.E is more severe than MS
• In the UK only £4 per person with M.E goes into researching the condition; in the USA it's around $5
• Most chronic health problems have secondary metal health problems such as depression and anxiety

References

• 5 Myths of ME/CFS
• ME Association: NHS to update classification system to reflect that M.E. is neurological disease
• ME Association: People with ME/CFS are more functionally impaired than people with Multiple Sclerosis
• Jessica Kellgren-Fozard on the PACE Trial (YouTube video)
• ME/CFS Myths and Facts
• Solve ME/CFS - 5 Myths of ME/CFS

Sunday 17th: Rest time

Resting is a really important aspect for me in managing my M.E and regular rest periods are built into my daily plan which was a tool I was given in rehab. 

Rest could range from contemplation (a practise of my faith), mindfulness - I particularly enjoy colour mindfulness; this is my favourite one which I do most days, listen to a podcast/audiobook or just lay in the quiet. Occasionally I will have a nap if my body just simply can't carry on.

Even though resting doesn't replenish my energy levels it gives me pauses in the day and they help me to keep going; not just physically but emotionally and cognitively too.

Monday 18th: Invisibility

M.E is an invisible illness; my symptoms can't bee seen so it can be hard for people to understand what I'm going through which can be upsetting and frustrating especially with the unpredictable nature of M.E.

People may get annoyed when I quickly forget something but they don't see that my M.E causes cognitive disfunction for example. Pain and fatigue also can't be seen but I would like people to spend a day in my body with all the symptoms I have so they can understand a little better at how it is for me not just physically but also to have an invisible illness. 

There are elements that can be seen like my wheelchair, crutches, home aids or disabled parking Blue Badge but these only come as a result of my invisible symptoms and they don't show what's going on in my body and people don't always understand for example when they see me get out the car and walk a few steps into my wheelchair. 

Kate Stanforth who I mentioned a few days ago raised a lot of awareness through a modelling campaign for George clothing, she has M.E and is an ambulatory wheelchair user an she raised a lot of awareness about invisible illnesses and the need to use a wheelchair even though your legs still work.

There is also the #MillionsMissing campaign by M.E Action which gives a voice to the millions of people world wide missing from society, from family gatherings, religious event, meet up with friends and more because they are too unwell as a result of M.E. 

Tuesday 19th: Brain fog

@yourachingart_cfs

Brain fog is the term many people with M.E use to describe the cognitive dysfunction aspect of the condition. 

Brain fog is really difficult to describe an explain without experiencing it for yourself. The best way to try and describe it it's like your brain has been filled with treacle so things like your speech, thoughts, co-ordination and other processes are all going in slow motion.

Another good way to describe brain fog is like someone is throwing a ball at you; you know it is coming your way and it's going to hit you. You're looking at the ball and the person throwing it but you don't realise any of this until the ball has hit you.

Wednesday 20th: Small wins

🌟 Getting out of bed
🌟 Getting dressed
🌟 Cooking a simple meal
🌟 Engaging in a hobby like writing a letter

Thursday 21st: Big wins

🌟 Showering/washing my hair
🌟 Leaving the house 
🌟 Doing an online Foundation Art course

🌟 My rehab stay, it was though but I didn't give up (even though there where times when I was ready to pack up and g home)

Friday 22nd: Something on my bucket list

One big thing I want to do again that's on my bucket list is to dance. I'd also like to  go back to University and get back doing my voluntary work.

Mental Health and Chronic Illness: Mental Health Awareness Week

I think I'm one of those people that's a bit more emotionally fragile and maybe if I'd been taught to be more resilient it might have helped. I've done a lot of work in the area of children and young people's mental health. I've worked on many projects including the CYP Improving Access to Psychological Initiative as well as speaking in parliament, working with YoungMinds and Beat and the Samaritan's to develop their DEAL project which gives resources to schools to help young people to become more resilient  - a project that I could have really benefited from it it was available when I was younger.

Even now I lack the resilience to deal with the emotional aspect of being chronically ill. Some days I am okay with the fact that I am chronically ill, other days I really struggle with being chronically ill. Heck, just being in constant pain affects my mood let alone everything else. 

Even with medication and other strategies my symptoms are still very debilitating and relentless and in terms of other treatments they are very few options. Some of these options are very difficult to access which I feel adds to the emotional aspect of being chronically ill as I'm not just dealing with the symptoms but I'm dealing with the frustration in struggling to get specialist support. On top of that there is also all the 'medical admin' that I have to do: emails, phone calls, meetings, paperwork, filing etc which is very time-consuming, overwhelming and tiresome.

This year I've tried really hard to reduce the medicalisation of my life. When you're chronically ill it's a full-time job. Sometimes I become 'sick and tired of being sick and tired' and I don't want to be ill anymore. Being ill is a full time job and over time you become lost within an existence of illness and you lose yourself.

My friend Ruth one gave this analogy "your life is like a piece of cake and you have ten portions, but only one portion is your health." It's true, being ill is not all I am, it's just part of my life, but sometimes it feels that way. But I'm trying to reclaim myself and make space in my life for the other nine portions of myself (easier said than done some days).

Then there is the comments of 'oh but you don't look sick' - but what should illness and disability look like? On the day of writing this part of the post I got asked by my social worker why I had an advocate and I explained; her response was something along the lines of "but you come across so confident and able to communicate well". I need my advocate because at time I feel voiceless or I'm not being heard, or recently I've struggled with getting my medications and prescriptions organised and I just reached the end of my rope with the pharmacy and my GP practise and I needed someone to help me.

Another recent example was that recently I've been going through a pain flare. This left me a emotional rock bottom, but the mental health crisis worker said should couldn't help me as the reason for me hitting rock bottom what a physical health matter (?!). This left me feeling even more alone as at present with this coronavirus situation much of my professional support network is on hold or vastly reduced down so I'm muddling through much of things on my own and since leaving hospital it's been a struggle.

I often use the analogy of a duck where on the surface I'm gliding along living my life, but underneath I'm paddling like mad just to stay afloat. 

Living with chronic health problems with a lot of unpredictabilities my life is riddled with anxiety and worry. When will my next seizure be? What will I next stand up and faint? Will I have a fall next time I go to the bathroom? Will I be able to get out of bed? How much worse will the pain get? And so on and on with these thoughts and worries. It makes hard just to get on with life.

It takes a knock on my confidence and independence too. I feel like I can't just have a "normal" life.

I feel the emotional aspects of physical illnesses and how this affects people like myself's mental health often gets overlooked. Healthcare focuses on the medical model: concentrating on your symptoms etc yet they forget to ask you how you are and how you're coping or not coping as may be the case.

There's also the isolation. Being mostly housebound I don't get to see a wide range of people. Isolation in itself has been proven to be linked to people's mental health.

I suppose to bring this blog post to an end my main point is there is so many emotional elements (and there are more than what I've just mentioned here) that feed into being chronically ill and that physical health and mental health go hand-in-hand. Care needs to follow more of a biopsychosocial model to meet the whole needs of individuals like myself so we are well not just physically, but emotionally and socially too.

#MEandMe: Week 2

Saturday 9th: What I've learnt

There are many things I've learnt since becoming ill with M.E. Some are more positives than others so I will focus on the positives.

Friendships is probably the main thing; making new friends and learning who my true friends are. The ones who have stuck by me and accept how my health affects my life by having to cancel plans a lot or for it taking me a while at times to reply to letters and messages or going quiet for periods of time when I'm not feeling well enough and friends just accepting me the way I am and also the friends that also have chronic illnesses/disabilities focussing on other things other than our health problems.

I've also learnt my own limits and working within them and learning to live wit and managingmy M.E. which is a continual learning progress and learning not to get too frustrated when I over do it. It's like there is a split between what Naomi wants to do and what my brain/body is able to do and sometimes they're not in sync and it's learning to do things within my limits without feeling like my M.E. is in charge of my life.

Sunday 10th: Emotions

Life with M.E. is scattered with a wide array of emotions too many to list here. - pretty much most emotions on the emotion wheel and it varies day-to-day. Some days are better than others. There are times of sadness, frustration and grief when you feel like your life is on hold or you can no longer do the things you once loved. There are positives emotions too like gratitude, or feeling blessed or loved when you're talking with a friend, or a friend had sent to a letter or when you feel like a medical professional is listening to you.

Monday 11th: M.E. in one word

(Exhausting)

Tuesday 12th: Something blue

  

The blue ribbon on Willow, my bear handmade by Amie who set up Bear Hugs for M.E. 
She knits bears for others all over the world suffering from M.E as something to do whilst bed bound with Severe M.E to bring a smile to fellow M.E warriors. 

Image description:

• Image 1: A blue ribbon on a cardigan for a bear with a button on with a red heart. The button has text reading "handmade for you with love"
• Image 2: A pale brown and cream knitted bear sat waring a pink hat and a turquoise and pink cardigan with a star on one side of the cardigan and a blue ribbon on the other side of the cardigan.

Wednesday 13th: Gratitude

Gratitude is something I've grown closer to since becoming ill. The smaller things become the bigger things like sitting outside in the sunshine, someone making you a cup of tea, a visit or letter from a friend, and projects set up to brighten up chronically ill people's days (which are most often homegrown projects by individuals working alone) etc. I feel that by feeling gratitude for things in life support my emotional wellbeing.
I also feel gratitude for the help and support I get both from family and friends but also the professionals who have supported me over the years.

Thursday 14th: People who've helped me

For a long time I went without proper support at home but I did have a few people; then in October last year I went into a special rehab ward. The people who have helped me along the way are:

• Family and friends
• Doctors including my GP, doctors and other specialised consultants
• Nurses and Healthcare Support Workers/Nursing Assistants
• Physiotherapists
• Occupational Therapists
• Advocates
• Psychologists/psychotherapists
• Social workers
• Home carers
• Support workers/Link workers
• Paramedics and EMT's
• Dieticians
• Orthotists

Friday 15th: People who who I look up to

What I hope comes from COVID-19

The coronavirus pandemic that the world is going through right now will go into the history books.

When the lockdown came into place the country panicked; they didn't know how they would cope. Many people had to start working from home and everyone was limited to only being outdoors for 1 hour a day and I know that people have really struggled with that both socially and emotionally too because it wasn't what they was used too.

But what about chronically ill and disabled people? This is a post I've been working on for a couple of weeks.

For some of us, like myself, social isolation is the norm and we've lived like that long before the lockdown for months; sometimes years. For me I've been coping fairly well; the hardest thing has been leaving hospital and not having all the support I need to keep well, but those that have been there for me have been really amazing.

There's two things that I hope will come out of this coronavirus pandemic and these are...

For a long time many chronically ill and disabled people have wanted to work but have wanted or needed to work from home. For the most part people have been told that this isn't a possibility. (I know myself, I would love to work but going into somewhere to work would be an impossibility.) But now because of the coronavirus pandemic business are coming up with lots of ways to allow their staff to work from home. I hope that we can continue to use this technology to allow chronically ill and disabled people to enter or return to work from their home.

The second this I hope that will come from this lockdown is a greater understanding from the public of what it's like for those who because of this health are housebound. Yes it won't be a true reflection as for people like myself who are housebound we can't go on hour long walks each day or have the energy to do some of the things people have been doing to occupy themselves such as binge watch TV (I often don't have the concentration for just one television program). But I hope that this lockdown gives the public some empathy into what it's like to be confined to your home.

There's also a lot housebound people can teach the public on how to cope with the lockdown. Some of my suggestions is to keep in touch with people via text or over the phone, through video apps, email or a good old fashioned letter in the post. My other advice is to take have some screen free time. Tap into a hobby you didn't have time before when you was going to work or get into something you've always wanted to do like baking, photography, reading, making your own zine or learning how to do keepeupies.

So take a thought about those who for them this lockdown isn't a temporary measure and make the most of the time you have whilst at home.

#MEandMe: Week 1

Friday 1st May: Who am I?

Image description: 

Naomi with each letter being used to create a word: unique, creative, thoughtful, myself, determined. The image is decorated with stickers including a rainbow, typewriter, a photograph of peonies, and a cartoon zebra.

Saturday 2nd May: Diagnosis journey

I was officially given my M.E. diagnosis on July 4th 2017 but I'd been struggling with my health for a while before then. I was repeatedly going to my GP complaining of fatigue and medically unexplained symptoms and and each time I was just told I had Post Viral Fatigue Syndrome.

I used to get frustrated with myself a lot wondering why I was so tired all the time or why I had this symptom or that symptoms but not knowing what was causing it and I tried so many different things to help but nothing worked.

When I got my M.E. diagnosis it felt like a weight had been lifted as I finally knew what was wrong with me. However, I'd never really heard of M.E. much and I was given no follow-up support. So I was mostly left to work out how to live with M.E myself.

Sunday 3rd May: Describe M.E.

Wow this is a difficult one to write without leaving a dissertation!...

M.E. is a neuro-immune illness; it is a multi-systemic meaning that is affects different parts of the body including the brain, muscles, joints, digestive system, immune system, nervous system and energy metabolism system. M.E is characterised by post-exertional malaise (PEM), a reduction in functioning and a severe worsening of symptoms after even minimal activity).

If I where to draw a picture of M.E. it would be a giant colourful scribble with the different colours representing the different elements of M.E. This would include symptoms, the lack of understanding of M.E, emotions, daily challenges (e.g. getting out of bed, getting a shower), small wins, bad and good days, the positives and negative elements of M.E, the different treatments and management tools, medications etc etc etc.

Living with M.E. is like living with my life on pause and I'm just waiting for my life around you to start again as I've had to stop doing so many things because of my health.

M.E. is also very unpredictable. For example I can expect to have payback from doing an activity (payback is a flareup of symptoms following an activity) but I can't predict to how bad the payback will be. I can't also know when I'll have a good or bad day or what range of symptoms I'll have that day; when those symptoms will start and stop, if at all and on what rating of the scale that symptoms will be; how bad my fatigue and pain will be that day; how foggy will my brain be and what I will be able to do that day and so much more. 

References

• M.E Action
• Action for M.E
• M.E Association

Monday 4th May: Current View

I've not long woke up and I'm just doing my usual sitting up in bed to get my body used to being sat up after being laid down all night. This is important for me to do because of my orthostatic intolerance - basically my body's autonomic system doesn't work so well so things like sitting up I need to give my body extra time to do as otherwise I get dizzy and lightheaded which can lead to me passing out. So I normally sit up in bed for about half an hour (it really helps to have my mattress elevator for this) and do some bits like going through my emails and taking my morning medication before making my way downstairs for breakfast.

Tuesday 5th May: Symptoms 

This is just a short summary of my M.E symptoms...

• Chronic pain inc differ types of pain
• Muscle pain (myalgia) and muscle spasms/cramps
• Joint pain
• Neuropathic pain and symptoms
• Persistent exhaustion and fatigue (not improved by sleep or rest - these just give your body a moment to pause s you can carry on as best as possible)
• PEM/PENE - Post Exertion Malaise or Post Exertion Neuro-immune Exhaustion
• Sleep problems (ironic I know!) such as broken sleep, insomnia, feeling more tired when waking up in the morning
• Hypersensitivity especially to noise, light, touch and smells
• Cognitive dysfunction, also known as 'brain fog' - difficulty thinking, finding words, memory problems, poor concentration, low attention span, organising thoughts
• Feeling flu-like and having a permanent cold
• Lowered immune system
• Sore throats
• Sensory disturbances such as a buzzing electrical sensation or a pins and needles sensation in my body
• Muscle and limb weakness
• Headaches and migraines
• Autonomic problems (problems with the body's automatic functions such as temperature control, digestion, blood pressure - this leads to dizziness and feeling faint, heart rate etc)
• Difficulty sitting upright and often having to have my legs elevated
• Gastrointestinal problems

Yes, I know I said it was a short summary but this is it without going into explaining each symptom to you!

References:

• M.E Association
• M.E Action
• NHS
• Action for M.E
• CDC

Wednesday 6th May: Daily Routine

Whilst I was in rehab the biggest part of of my treatment was giving me an established routine(called a 'daily plan') with alternating activity and rest periods with meals, snacks in-between.

Since coming home from my hospital rehab stay I have struggled with the morning part of my routine especially getting out of bed but I'm trying my hardest which is all anyone can ask for.

I try if possible to move around and be in different parts of the house but my bedroom is still the main place where I spend my time.

I was going to share with you my Daily Plan and even though I try to follow it as best as I can I've realised that there is not average day or daily routine as M.E doesn't have a habit of being routinely. I could wake up and feel so unwell that I spend most of the day in bed or I could wake up, feel fine but then get to that afternoon and I find I can't get up off the sofa as I'm so tired I'm almost catatonic.

I generally just take each hour as it comes.

©stacieswift

Thursday 7th May: How I cope

❤️ Having a daily routine with regular rest periods
💛 Listening to my body and knowing my limits
💚 Pacing and grading
💙 Putting a timer on when I do tasks so I don't overdo myself
💜 Doing a daily mindfulness/meditation session
❤️ Practising self-care daily in small and bigger ways
💛 Eating well and keeping hydrated
💚 Massages for my muscle and joint pain and headaches
❤️ Distraction activities
💛 Having supportive friendships and family
💚 Focussing on the non-health parts of my life
💙 Having a healthy online life
💜 My faith
❤️ Turning positives into negatives

Friday 8th: Advice to others

1. It's okay to cancel or limit plans
2. M.E is different in every person
3. Listen to what your body is telling you 
4. Learn how to pace and grade
5. Understand your symptoms and learn how best to manage them
6. Tasks don't just include those that take up physical energy. There's also emotional and cognitive energy too that include activities like reading, talking or colouring for example and just like physical actives you need to be careful with those activities too
7. Develop a daily routine alternating activity periods with rest periods and vary your day with activities that take up different kinds of energy
8. If you are struggling with any aspect of your care such as you feel you are not being listened to or you're struggling to manage then get the support of an advocate 
9. Get a good, supportive and understanding GP
10. If you need to get your medication delivered and if you struggle with managing your medication ask your pharmacy or GP to put your medication into a medication tray (some pharmacies may use another name for these)
11. It's okay to need to use aids and adaptations inclusion mobility aids, often it can feel like you're too young to be needing such things but they are there for everyone to use if they  are in need of them
12. Balance your day out with activity and rest periods
13. Become a member of organisations such as Action for M.E* and the M.E Association*. I recommend this as by becoming a member it gives you access to advice, information, guidance, latest research and support.

* Links to membership

May's Monthly Make - Easy Origami Bookmark

For my first monthly make I'm going to show you how to make a simple origami bookmark...

Difficulty rating: ★ ☆ ☆ ☆ (Simple)

Materials:

• Square piece of paper - I used 15cm x 15cm (plain or patterned)
• Things to decorate you bookmark such as washi tape or stickers

Step 1

Place your paper face down and place it in a diamond shape.

 

Step 2

Fold the bottom corner up to meet the bottom corner. 

Step 3

Fold the right and left corner up towards the top corner making a firm crease and then unfold.

 

Step 4

Fold down the top half corner to meet the middle of the triangle.

Step 5

This is where it might get a bit tricky. Fold the right corner and tuck it inside so it will look like picture 2.

 

Step 6

Repeat step 5 with the left corner. You have now made you're bookmark!

 

Step 7

If you wish you can decorate your bookmark. I've used washi tape here but you can use stickers or draw pictures. If you really want to get creative you can add ears and turn your bookmark into an animal.