Helen Hyland, Fundraising Manager, ME Association.
Just over two years ago, Alison Woodland completed a very special challenge – having taken over 14 months to walk 250,000 steps to fundraise for the ME Association. One step for every person in the UK with M.E.
Now Alison’s back and marking the 10th anniversary of the day she first became ill. She held a tea-party at the end of July, but, with her permission – and your support – we feel this is one party that deserves to go on just a little bit longer.
Please read and support Alison in whatever way you feel you can.
Alison writes:
“For 10 years I was silenced,
“For 10 years I was too ill to voice what I was longing to say,
“Now, on my 10-year anniversary of having M.E. all that changes,
“It may have taken me 6 months to put it together, but this is my story, in my own words, for all to read.
My Story:
I know this is a long read, but it was really important that I challenge myself to express my feelings about life with M.E. in a way that I have not done before. It would mean so much to me if you could read as much as you are able. Thank you.
10 years of having M.E. – not the easiest thing, to say the least! But that’s exactly why I want to celebrate my 10-year anniversary.
I want to celebrate the strength it has taken to get through these past 10 years, and the journey I have been on – the big things, the little things, the everyday things.
The question was, how to do that? How could I find a way to celebrate something with everyone when I have such limitations?
Social isolation
I have always loved spending time with family and friends – I think it is one of life’s greatest pleasures to feel connected to others, to spend time with one another, face-to-face.
But since getting M.E. this has become a pleasure I am not able to enjoy nearly as much as I would like, as every visit takes a lot of my energy and mental /cognitive headspace.
Last year I managed 6 lots of visitors – it was my best year yet and was simply wonderful!
As you can imagine it is hard not having that regular face-to-face contact with family and friends, especially when messaging is also difficult to do.
I am so lucky to have such wonderful, loving and understanding family and friends, and I miss them all so very much.
I desperately wish I could see them all more, be a more constant presence in their lives, be able to chat like we used to, have fun like we used to, laugh like we used to.
So that’s why I chose my most recent fundraiser to be my own version of a virtual tea party! It was a chance to celebrate my special day with everyone, but in my own unique way…
Tea party with a twist
My virtual tea party was held on Monday 30th July 2018, the actual day of my 10-year anniversary (or should I say ME-versary!).
Throughout the day, I posted pictures of myself enjoying my many cuppas (I do love tea!) during my normal daily routine, giving others a glimpse into my day to day life.
People could follow my day via my JustGiving page and I also set up a public Facebook group, which you are welcome to check out: ‘Alison’s Anniversary Tea Party (With A Twist!) – A Virtual Tea Party’
It attracted many posts and photos from other people with M.E. all of whom shared their favourite brew and joined in the fun.
Please note that in order to cope with this event, many of the posts were written in advance and tweaked on the day. But all photos were taken live. A big thank you must be said to my Mum for helping me with all this and for making all the cups of tea (both today and for the last 10 years)!
My challenge, for this fundraiser, came in two parts:
- My mental challenge – Currently, I am able to do about10 minutes of mental activity in a day. So, as you can imagine, putting this fundraiser together was quite the challenge, which is why I worked on it, on and off, bit by bit, for six months.
- My emotional challenge– I’m trying to be honest, be real and show you the true picture of what life with M.E. is like for me. Be myself, just as I am, and challenge myself to express some of my feelings to the world. Some of which I have not voiced out loud to many. I’m not going to lie, it’s a little scary! But surely that’s a great reason to do it, right?! I feel like it’s a really positive thing for me to do, both for myself and for raising awareness of M.E.
When asked “How are you?” My usual answer is “Not bad thanks”, because, to be honest, it’s easier to say! It’s so hard explaining to people what it’s like having ME.
But, this fundraiser is all about me being honest and putting it out there – so, in the interests of doing just that, I’m going to tell you how it is, the symptoms that I deal with on a day-to-day basis, that people with M.E. have to learn to accept and manage, that most people don’t think of when they say “M.E. That’s the one where you get tired isn’t it?”
My experience of M.E.
I think many people with M.E. would say they wish it was just tiredness – it’s a bit like saying a broken leg is just a scratch. For me, the ‘tiredness’ symptom is beyond anything I have experienced before – it is a draining, debilitating, nauseas, mind-boggling state of fatigue that leaves my body struggling to function.
And then there is the other type of fatigue. It’s a restless, unsettled, adrenaline fuelled, wired, body jerking, hyper-fatigue that is full of tension physically, mentally and emotionally. It comes when I’ve have overdone it. It is so intense, and personally I find it the hardest to deal with as it makes me feel like I desperately need to be doing something, despite knowing I have absolutely nothing left in me. This is always a dangerous time as it is so very easy to act on these feelings and overdo it even more, causing a vicious circle.
But there is so much more to M.E. There are such a wide range of symptoms that different people will experience in different ways.
People with M.E. have a vastly reduced stress response. This means that any physical, mental, or emotional activity can very quickly overwhelm the body and become too much, worsening symptoms.
When you have M.E., you have to adopt a new way of living. Every daily task has to be paced and broken down to have rest periods in between. It is a very fine line that you have to balance on.
Some days you will manage it, some days you won't, and that's why showing yourself kindness is vitally important to living with M.E. – pacing is not at all easy. You have to balance your activities so that both your physical health and your mental wellbeing are taken into consideration. Any activity where you might overdo it means that you have to factor in plenty of time to allow yourself to fully recover otherwise that's a sure-fire way to go downhill fast!
A big part of my M.E. is a condition called POTS (Postural Orthostatic Tachycardia Syndrome). This basically means that the system in the body that helps you adjust to different postures doesn't work properly, therefore I have to spend most of my time laying down. Any other posture, exertion, extreme temperatures, or big meals set off symptoms such as fast heart rate, light-headedness, palpitations, feeling faint, and breathlessness.
M.E. also affects the brain. As I have already mentioned, mental activity is quite a challenge for me. On a daily basis I can only do about 10 minutes. If I were to do more than this, and on bad days, it will feel like my head has been stuffed full of cotton wool. I will feel swimmy, frazzled, with brain fog and everything will be much slower, including my speech which also can become quite slurred.
I also have to speak using very simple phrases. I have trouble finding the correct word to use, and my body will jerk a little. It can be difficult to keep up with conversations. It's a bit like trying to walk through knee-high mud – even if you can manage to keep up, it gets harder and takes a big toll on you. Conversation needs to be kept quite slow and one voice at a time.
Other symptoms that I experience regularly are headaches, unrefreshing sleep, moods, sensory sensitivities/overload, general feeling of unwell, sore throat, sensitive stomach, aches/pains/stiffness, difficulty controlling body temperature, and weakness.
An invisible condition
Personally, one of the strangest things I find about M.E. is how well I can look, despite how bad I might feel – I’ve lost count of the number of times people have told me this, and I never quite know how to respond to these comments – I just wish I felt as well as I looked!
It’s just bizarre! I look at photos that I have taken of myself on one of my occasional trips out and I can fully understand why it is hard for people to understand M.E. I look perfectly well and healthy – it’s really only the wheelchair that gives it away – and when the adrenaline is flowing there is a short period where, just for a little while, I feel blissfully normal.
What people don’t see are the after effects that an outing has on me – those photos aren’t posted (to be honest they aren’t often taken!). There’s been a part of me, in the past, who has wanted to, to try to help people understand.
But I haven’t wanted to make a fuss, I wasn’t sure it was pictures people would want to see. I also don’t want to be defined by my illness, I want people to see me for me and not get lost in the medical explanations.
My tea party is where that all changed, as I posted pictures of myself, just as I am throughout a normal day – crashes and all! And I am proud of myself for doing that.
When it all began
On 30th July 2008, having just finished college and about to start a new job in September, I became ill with some kind of fluey-chesty-virus-like-thing (yes, I believe that is the technical name for it!).
I was left with a range of symptoms that just seemed to get worse. Over the next year I had many tests and medical appointments, but all they could find was an extremely high heart rate. Every test result brought with it a mixture of relief and despair. And, as time went on, I started to doubt myself, thinking that I needed to just ‘get a grip' and so I kept pushing myself to keep going.
There is no specific test for M.E. it is a diagnosis by process of elimination. This is why research is so important not just to help find a cure and effective treatment, but to find a test for it so that people will not keep pushing themselves, making themselves worse while waiting for a diagnosis.
Research is just one of the ways money from my tea-party will be used by the ME Association…
A diagnosis but no real treatment
In June 2009 I was finally diagnosed with M.E. Although there was some relief at having a name for it, it was actually quite a disheartening diagnosis as it soon became clear there was no real treatment. I was simply given a leaflet on pacing and left to get on with it.
When you find yourself going downhill with no real explanation you start to lose faith in yourself. Bit by bit elements of your life and independence slip through your fingers. You desperately try to hang on to them but, like water, they trickle through regardless.
In the space of a few years, I went from an active life to needing help just to get to the toilet and having to be picked up off the floor when even that became too much. For about 4 years I didn't see the outside world or most of the rooms in my own home. I wasn't able to cope with visitors. Mum became my carer and I relied on her for everything. Even a simple wash that she gave me while I laid in bed was completely draining.
It is heart-breaking to watch your loved ones become your carers, having to care for you on top of their own lives. Even now Mum has to check I have everything I may need within reach before she can even leave the house.
Not all superheroes wear capes…
My Mum is a shining example of a superhero. I don't know where to begin thanking her.
It's hard not to feel guilty for all she has to do, but over time I have learned that it is not me that causes her all this work, it is M.E. and they are two very different things that just happen to reside in the same body.
As time went on I found I had stopped deteriorating, and, as more time passed, I was actually getting some small positive signs.
It was at this point a physio came but it proved too much for me to maintain and my body completely freaked out. I felt overwhelmed and anxious – which I now understand is my body's way of telling me I'm overdoing it – and this together with my already fragile mental health (from coping with illness for all this time, the drastic changes to my life, plus I have always been a fairly anxious person and have had OCD tendencies in the past) caused me to spiral into a complete mess.
A dark and scary time
I was having intrusive thoughts, but I didn't know what they were or understand them. I didn't know that they were no reflection on me, and so assumed that these thoughts that were going through my mind meant that I was a bad person.
I was petrified all the time. I didn't know what to believe or what was real. I couldn't see anything clearly, and I doubted everything about myself. I became almost incapable of making the simplest of decisions. I was utterly lost. It was a very dark and scary time.
I didn't know how to get through the next hour, let alone the next day. I spent my waking hours just wanting to be asleep, yet when sleep came it was full of vivid, horrible nightmares. The limitations of my illness made getting help very difficult which left me feeling trapped. It was hell.
Fortunately, I found a way through it and am in such a better place now mentally, but it still haunts me – I wish I had known about the ME Association helpline (ME Connect), maybe they could have given me or my Mum advice or at least helped us feel less isolated and alone. It is such a crucial service to so many and your money will be used to help support it.
Mindfulness, meditation, medication and counselling
There are so few resources available for those who are housebound, especially with M.E. Fortunately, through my own research I started practising mindfulness and meditation and learned to understand better the way the mind works.
With that, and medication, I eventually (2 years later) got to a place where I could go to counselling. It was brilliant at helping me to know myself, accept M.E. and understand that it's OK to grieve for my life as it was before.
All of which, as you can imagine, was crucial for my mental wellbeing. It helped me find acceptance and embrace the way things are now. I still hold on to hope that improvement is around the corner – but I am not reliant on it. It was so tough on my body to cope with the sessions, and it took a very long time to recover but I felt it was worth it.
I wish there had been services available to get the help at home. It would still have been challenging physically, but I would have been able to get the help quicker, and without taking quite such a brutal toll on my body. I just thank my lucky stars that I have such amazing family that helped and supported me through this time, and throughout the whole of the last 10 years.
I don't know where I'd be without them!
Where I am today…
Nowadays, I'm in the best place I have been in so far. I can shower without help every three or four days, and I can wash most days in between. I can get dressed. I can open the curtains and windows in my bedroom. I make my bed. I can do the stairs without aid at the beginning and end of the day.
I can pop my head into different rooms and occasionally lie in the dining room with the view of our garden. I can very occasionally lie out in the garden. I can do about 10 minutes of mental/cognitive activity in total every day (e.g. looking at my phone, reading/writing messages (with the aid of ‘speech to text’), Lego, colouring, craft).
I can get out the house once or twice a month, which can be (depending on how I am) anything from a 20-minute stroll (or should I say roll as I'm being pushed in the wheelchair!), to an appointment, or a trip to the local cafe for about an hour a few times a year.
Once a year, or twice if I'm lucky, I can get to my friend's beach hut where we can lie on loungers and soak in the atmosphere – it is sheer bliss and worth every bit of the after affects!
But that's not to say it isn't tough, because my gosh it is. I get days when I feel down, days when it all feels too much, days when the frustration is simply unbearable; but when I compare myself to where I was it's still a great feeling, and I so hope it continues!
Regrets
The hardest thing about this illness is the precious time that it has taken from my grandma’s and me in the last years of their lives. I used to visit them regularly so going from that to not seeing them at all was particularly painful.
I do count my blessings that, after five and a half years apart, I was fortunate enough to see my Nannie a few times before she passed. This was only because she was in a Rest Home in Worthing so very local to me. And, with a massive effort, I was able to attend her funeral.
Unfortunately, I wasn't so lucky with my Nanna as she passed away whilst I was at my worst and so I had no chance of visiting her or attending her funeral. This broke my heart. But, I take a lot of comfort in knowing that I have two very special angels watching over me and hopefully feeling very proud.
Reflections
I wouldn’t be the person I am today without the last 10 years. That’s not to say I wish it wasn’t different, it’s not to say I wish I wasn’t ill, or that the M.E. had never happened – but I refuse to feel regret for something that has made me the person I am now – and I am proud of who I am. I have never felt stronger in my life than I do in saying it out loud right now.
I cannot lie, there is a longing within me to cradle my own child in my arms, to be a Mum. So many of my family and friends are now in this chapter of their lives, having their own place, married, with their own families. But that is so far removed from my capabilities at the moment that it is difficult sometimes to not wonder if it will ever be a reality. And that brings a lump to my throat and a tear to me eye. It is something I struggle with.
I have learnt that it’s OK to struggle, and that admitting it is a sign of strength, not weakness. No matter how much you try to live in the present moment and comfort yourself in the knowledge that no one can predict what is around the corner, these thoughts will always crop up from time to time.
But I know that I am just on a different path, my own path, and that's OK too. It’s OK not to know what’s around the corner, it’s OK to find that a little scary, and it’s OK to just enjoy the path for what it is right now, in this very moment.
Whatever life brings for me, and however different my path may look from the life that I imagined, I know that I can make it beautiful and meaningful. The vase may have smashed but that does not mean I cannot create something unique and beautiful from the pieces.
Having M.E. has taught me a lot over these last 10 years…
- I have learnt to be grateful for all I have and to find acceptance with what is,
- I have learnt to appreciate the small things,
- that achievements can come in all different shapes and sizes, but all mean just as much as each other– from creating this fundraiser, to just getting through each day,
- strength comes in the everyday things, in the moments when it all feels too much, in pacing, in resting when you need to, in asking for help, in putting yourself first and using the words ‘no – not today’ when every ounce of your being wants to say, ‘yes let’s do it!’,
- that True Friendships aren’t about how often you see each other,
- I have learnt to live life by what I can do and not what I can’t,
- I have learnt mindfulness, meditation and relaxationand have benefited so much from doing so,
- I can still achieve things, I just have to do them my way– little by little until they turn into something big – like this fundraising event,
- that family and friends mean everything.
I haven’t written all this because I want pity or sympathy. I am telling you all this because it needs telling – so that M.E. can be better understood and acknowledged. And so that the way I live my life can be better understood by those around me.
This is why research is needed.
This is why better understanding, and education is needed.
This is why support is needed.
This is what the ME Association does,
This is why I’m raising money for them,
This is how we make the difference – one step at a time – £1 at a time.
They say that life isn’t about waiting for the storm to pass, it’s about learning to dance in the rain – so this is me, dancing in the rain…
It’s not too late to join the fun…
All you have to do is donate the price that you would spend on a cuppa! Or maybe it’s a cuppa and a cake that takes your fancy?! Or why not go the whole hog – a cuppa with a luxury cream tea!
There are two easy and secure ways you can do this:
By Text:
To donate the price of a cuppa text: CUPA96 £1 to 70070
To donate the price of a cuppa and a cake text: CUPA96 £3 to 70070
To donate the price of a cuppa with a cream tea text: CUPA96 £5 to 70070
Or you can donate any amount via Alison’s JustGiving page
Why not also post a picture of yourself enjoying your favourite cuppa on the public Facebook group: ‘Alison’s Anniversary Tea Party (With A Twist!) – A Virtual Tea Party’
Alison would love to see you there!
The ME Association
Please help us continue our work
Please donate – whatever you can afford – to help us continue with our work to make the UK a better place for people with M.E. Just click the button below to visit our JustGiving page:
Or why not join the ME Association as a member and become a part of our growing community? For a monthly (or annual) payment you will not only be helping to keep us doing what we do best, but will receive our exclusive ME Essential magazine.