I walked 15 km today for Julia and Mandie

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Today is my last day of the Camino long walk.
For Julia and Mandie Chapman.
“I never understood M.E. until I had it. It’s like being sick in reverse.. the usual things to do to feel better don’t work.”
This is Julia’s story:
When were you first diagnosed with ME/CFS/Fibromyalgia? 
2009
What was your life like before you first fell ill with ME/CFS/FM? 
Very busy. I was an active person.. also a lot of family stress to deal with.
What do you miss the most since having ME/CFS/FM 
Walking, studying and working my dream job that I spent 10 years training for. Also fun activities and adventures with my now grown up family as we used to do.
Describe your worst day with ME/CFS/FM 
Sick, just sick. My whole body hurts so much, pain, burning. I feel so sick, unable to do anything but rest as best I can, which is almost impossible with the pain and sickness.
Describe your best day with ME/CFS/FM
When I can get out, clean and fresh. When the pain can be dulled by pain medication and when I feel happy enough for the pain not to matter.
Describe your typical day with ME/CFS/FM
There is no typical day with M.E.
What would you *most* like the world to know about living with ME/CFS/FM 
You will never know how bad it can be unless you have it yourself. I never understood M.E. until I had it. It’s like being sick in reverse..the usual things to do to feel better don’t work. Exercise makes the illness worse, anything using energy makes it worse..even the happy things. There’s no cure.

And here is Mandie’s long struggle with the illness, she was diagnosed in 1995.

“That the people suffering are still the same people who need to be part of the human race and not ignored, shunned or pitied.”
What was your life like before you first fell ill with ME/CFS/FM? 
Full, I had two children under 5. Worked full time in a job I loved and had just helped to restore and rebuild a house
What do you miss the most since having ME/CFS/FM 
Knowing that on any given day I can do “normal” things. Having friends and a social life- being able to work full time. Being considered a full person
Describe your worst day with ME/CFS/FM 
No control over limbs- incredible pain, headaches, brain fog. sleepless nights
Describe your best day with ME/CFS/FM
being normal again.
Describe your typical day with ME/CFS/FM
alarm goes off, I have to snooze it for half an hour before getting up else my legs collapse. Showers have to be judged as they make me ill. Pacing- no background noise like radios- tired all the time.
What would you *most* like the world to know about living with ME/CFS/FM 
That the people suffering are still the same people who need to be part of the human race and not ignored, shunned or pitied. Also- that doctors do not always recognise the illness so it takes a lot of courage and effort for sufferers to get what limited help there is.
Anything else you would like to share?
There is a life to have with ME.

This dedication is part of Mike’s Camino de Santiago walk.
Read why Mike is walking 255 km for ME/CFS/Fibromyalgia.

Please consider supporting important research by making a donation to my JustGiving page and definitely share this post. Thank you.


Today I walked 24 km for Jennifer Dendor

mike-jen
“The frustration of not being able to scratch an itch, or turn over in bed as your body felt like it was made of lead, was gut wrenching.
Here is Jennifer’s story of how she manages a family with a small daughter and at the same time, keeping her condition under control.
When were you first diagnosed with ME/CFS/Fibromyalgia? 
I was officially diagnosed at the age of 13, although my parents had suspected it for many years before this. I had glandular fever at 18 months old and afterwards I had lots of unexplained joint pain.
What was your life like before you first fell ill with ME/CFS/FM? 
I was so young when I started to get symptoms I really don’t remember being completely free of them. What I do remember is feeling ok between the dreadful joint pain. I loved ballet and was really sporty at school. I can remember feeling like I could do anything. But after exercise, I would suffer horrendous pain and it wasn’t sustainable. I had to give up PE at school at 9 years old in order to maintain attendance for the academic subjects.
What do you miss the most since having ME/CFS/FM 
On the inside I feel like a really active person – I long to run… I dream about it. I long to move my body freely without paying a price. I guess I miss knowing I can do what I want to without suffering afterwards.
Describe your worst day with ME/CFS/FM 
From the age of 13 – 18 I was completely wheelchair bound, and bed bound for a lot of that time. My worst days at that point were pretty horrific. Unrelenting, excruciating pain is what stands out the most. The constant head pain stopped my brain from functioning properly; I couldn’t think about the simplest things. The frustration of not being able to scratch an itch, or turn over in bed as your body felt like it was made of lead, was gut wrenching. This was on top of all the other symptoms; heart palpitations, crushing fatigue, dizziness, loss of temperature control, constant sore throat and flu like feelings. I was extremely lucky to make a fairly good recovery but have had several relapses since this time when I’ve been back in this position. In between the relapses, it’s been a matter of managing my symptoms and energy and trying not to overdo things, which would always make things worse.
Describe your best day with ME/CFS/FM
My best days would be the days where I control the M.E. rather than having it control me. I can feel now whether I’m on an upward or downward spiral and I can be pretty sure of my limitations.  I know what state I will be in if I push these limits. When I can organise my time and plan my energy and rest, the feeling of control is very positive.
Describe your typical day with ME/CFS/FM
A typical day is all about managing my symptoms and energy levels. There are always some symptoms including pain, heart palpitations, headaches, swelling, ‘brain fog’ and stiffness. By managing what I do and how I do it, I can reduce these symptoms and ensure I can cope during the next day. I have to plan ahead at all times to make sure I do not over-exert and have enough time to recover from any activities. Now I have a young and wonderful daughter to look after, this is a much harder job, but all the more reason to get the balance right.
What would you *most* like the world to know about living with ME/CFS/FM 
I would most like the world to have a small amount of understanding. First, it is important that people understand that not all people suffering from these conditions show visible signs. Depending on my level of suffering, I can cover it up. This doesn’t mean that I am not in pain, or that I won’t be in pain later. It is also important that the world understands that the conditions do not exist solely in the head of the sufferers. It is not caused by depression, although the extended suffered can leave you feeling depressed. In fact, some of the times during which I have been at my worst physically have been during some of the happiest periods of my life.
Anything else you would like to share?
My husband sometimes knows my limits better than I do. I think this is because I don’t like to admit I have limits and I can get carried away. Most people I’ve met with a similar condition seem to have the same inner desire to be active.

 


This dedication is part of Mike’s Camino de Santiago walk.
Read why Mike is walking 255 km for ME/CFS/Fibromyalgia.

Please consider supporting important research by making a donation to my JustGiving page and definitely share this post. Thank you.


Today I walked 30 km for Jenna and Giselle Atkinson

jenna-giselle-mike
Dealing with ME/CFS/Fibromyalgia is not just your personal suffering and your loved ones’- but also the attitude of society: not taking you seriously as a disabled person.
Jenna, Happy Birthday. I’m so honoured to have both of you sharing your stories here.
Jenna is the daughter of Giselle, and both have suffered from this illness for a long time (12 and 26 years)
This her story:
When were you first diagnosed with ME/CFS/Fibromyalgia? 

2004

What was your life like before you first fell ill with ME/CFS/FM? 

I was a pretty normal little girl and I loved playing with all my friends that lived on my street, enjoying anything that gave me a chance to get mucky like painting, ‘helping’ with DIY and jumping into any mud I could find.

What do you miss the most since having ME/CFS/FM 

The carefree way I lived my life, being able to spend time being a kid without constant thoughts about the state of my health and my future.

Describe your worst day with ME/CFS/FM 
Pain. Sleep. Disorientation. Sleep. Anxiety. Sleep. Depression. Sleep. All strung together into a day, I will be unable to tolerate noise, bright light and human interaction will be beyond me, I will be dozing in bed while life goes on around me.
Describe your best day with ME/CFS/FM

My best day with ME is when I can get through a standard day (being able to wash and dress myself, cook myself to one meal and perform one household chore) without being in physical pain or crying by bed time.

Describe your typical day with ME/CFS/FM
I get out of bed at 13.00 and eat something easy to prepare for breakfast. I prioritise the task for the day (for instance put a wash load on) I then go back to bed from 2.30-5.30, wake up and eat dinner prepared by someone else, do a light activity such as sewing or watching TV in the evening before going to bed around 22.00. One day a week I attend a counselling session to help me fight the anxiety, depression and low self esteem mostly caused by being so restricted from such a young age.
What would you *most* like the world to know about living with ME/CFS/FM 

I look exactly like you. I don’t sit in a chair (due to poor hand eye coordination and concentration I am actually unable to drive one when tired!) and I don’t have a white stick but my illness is still debilitating.

Every time I need to use a disabled toilet because I cannot physically stand in a queue I am scared that someone will call me out. “Faker”, “You don’t LOOK sick” and “Skiver” have followed me like a cloud since I was 11 years old, making it hard for me to take the steps I needed to really rest and recover for fear of the anger of the teacher, the nurses or even my friends.

Please think before you stick up for the disabled by accusing people of abusing disabled spaces, 96% of disabled people do not use wheelchairs (Papworth Trust disability facts and figures 2010) but we need them too.

If I say I can’t do something don’t try to persuade me (or any sufferers in your life) that I could do it if I tried or that I should try a treatment that worked for your second cousins dog sitter, I know my body and I have tried everything. Even if it comes from the best possible place you won’t be telling me anything new!

Anything else you would like to share?

Thank you for reading this, the fact that I can share my story shows how much improved I am. When you are with a person with ME it’s probably because they are at the peak of their health and what you wont see is the impact of that interaction on the rest of their lives.


Here is Giselle’s story:

When were you first diagnosed with ME/CFS/Fibromyalgia? 
1990
What was your life like before you first fell ill with ME/CFS/FM? 
Busy, fun, hopeful, hard working
What do you miss the most since having ME/CFS/FM 
Walking and being “myself” I don’t recognise the person I have become.
Describe your worst day with ME/CFS/FM 
Being in so much pain and having so little hope that I started thinking about committing suicide. I promised myself that if in a year’s time nothing had changed I could do it. Luckily for me as I understood more about pacing things did improve.
Describe your best day with ME/CFS/FM
It is difficult to say as ME is such a long journey. Was it the first time I woke up without a fever, or was it when I managed to walk to the end of my front garden path (5 metres!).
A day without pain is pretty good. Many of the “big days”, the birth of my daughter for example, are difficult to remember. Having ME seems to interfere with laying down memories. I think the best day is yet to come.
Describe your typical day with ME/CFS/FM
I wake up at 11.30, come around slowly, empty the dishwasher and get breakfast. During breakfast, I decide what the top priority task for the day is and try to get it done. I can do about 40 minutes before I need to rest so it might be an opticians appointment, mending something that has broken, doing my finances, getting the food bought.
Then if I am pacing properly (not always the case) I rest for an hour listening to the radio. By now my daughter will be up and we will decide who is best able to walk the dog, if neither of us can manage we call my mum, who is 84, and she walks the dog for us! Once the dog is walked there is a huge sense of relief as she has been looked after. If I have walked the dog that is my second 40 minutes used up and I am resting again.
I have one activity session left which I often use to cook an evening meal. The evening is most often spent watching TV as it is a reasonably low energy activity which I can usually manage. I will get to bed at 11.30.
Unfortunately sleep is unpredictable, It might take me an hour to get to sleep or 5 hours. When I was working part-time not sleeping was a huge problem. I feel lucky everyday that I am now living on my savings and I can be much more relaxed about it and just get what sleep I can. It is not an exciting day but it means no constant upper respiratory infections, a brain that can string 2 sentences together and much less pain.
Living like this for a day, a week or a month is not a problem, living like it for years means there is little room for friends, work, holidays or family. To include these in your life means you have to push beyond your bounds and make yourself ill. 1 night out might need 3 weeks in bed to recover. So for 3 weeks no housework is done, someone else has to walk the dog and life is put on hold, again.
What would you *most* like the world to know about living with ME/CFS/FM 
How difficult it is emotionally, physically and mentally. At the moment it is a life-sentence , it never ends, there is no break from it, each day is a fight to balance what the world demands from you with what you are able to give.
Anything else you would like to share?
If you want to know what it feels like to have ME then the next time you have a bad case flu think of it lasting for the rest of your life.
I would like to emphasise that it has taken me 25 years to get from being up for 10 minutes at a time to now managing 40 minutes 3 times a day. The doctors would classify mine as a mild case of ME or in some circles “cured”. Although it is fantastic that I can now walk the dog for 20 minutes, I can’t do it every day, it hurts, I have to go straight back to bed after doing it and  it means I don’t clean my house.

This dedication is part of Mike’s Camino de Santiago walk.
Read why Mike is walking 255 km for ME/CFS/Fibromyalgia.

Please consider supporting important research by making a donation to my JustGiving page and definitely share this post. Thank you.

Today I walked 20 km for Ben Howell

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Ben Howell shares with us his story today about how he went from a very active person building a career in the fitness industry to not being able to exercise or leave the house.
“Non-functional, like the worst flu and worst hangover, combined with having run a marathon.” – is how this illness like in Ben’s words.
When were you first diagnosed with ME/CFS/Fibromyalgia? 
2011
What was your life like before you first fell ill with ME/CFS/FM?
AMAZING! At University for the second time, starting to build a career in the fitness industry, working part time as a gym instructor.
What do you miss the most since having ME/CFS/FM 
Being able to exercise. Being able to do the most basic things, like wake up and not feel absolutely horrific, flu-like, exhaustion beyond words.
Describe your worst day with ME/CFS/FM 
Non-functional, like the worst flu and worst hangover, combined with having run a marathon.
Describe your best day with ME/CFS/FM
They don’t really happen!
Describe your typical day with ME/CFS/FM
Housebound, unable to cook, unable to exercise at all.
What would you *most* like the world to know about living with ME/CFS/FM 
It is a very real, biological illness, that is seriously underfunded, with absolute inadequate treatment from the NHS.
Anything else you would like to share?
Thank you for doing this Mike.

This dedication is part of Mike’s Camino de Santiago walk.

Read why Mike is walking 255 km for ME/CFS/Fibromyalgia.

Please consider supporting important research by making a donation to my JustGiving page and definitely share this post. Thank you.


Today I walked 30 km for Maria Solano

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“Each day is a day working towards recovery and finding the strength I never knew I could have.” – Maria

When were you first diagnosed with ME/CFS/Fibromyalgia?

1998

What was your life like before you first fell ill with ME/CFS/FM?

Pre CFS – danced 6 nights a week, worked as a chef, played soccer, went snow skiing, water skiing, camping, bushwalking

What do you miss the most since having ME/CFS/FM

Independence. Being able to work, drive, be spontaneous, plan things, get up early, see family, go on trips by myself.

Describe your worst day with ME/CFS/FM

Don’t have the energy to eat, get up, go back to bed, do that all day. Want to be active with every fibre of my being, my being feels like it has been injected with lead in every vein.

Describe your best day with ME/CFS/FM

A couple of hours out with friends at dinner/lunch, live music.

Describe your typical day with ME/CFS/FM

Half an hour of study, some jigsaw, journal writing, sitting outside in the courtyard with a tea and the newspaper.

What would you *most* like the world to know about living with ME/CFS/FM

It’s real. It’s like being in a waking coma every day, it’s pain, exhaustion, wanting to sleep, too exhausted to sleep. Wanting a “normal” life, to play, to work, to love, to be part of life and all it’s amazingness.

Anything else you would like to share?

I will never give up hope. Each day is a day working towards recovery and finding the strength I never knew I could have. It’s never taking anything for granted. It’s the hardest life lesson tinged with the beauty of self-awareness and the appreciation of being alive.


This dedication is part of Mike’s Camino de Santiago walk.
Read why Mike is walking 255 km for ME/CFS/Fibromyalgia.

Please consider supporting important research by making a donation to my JustGiving page and definitely share this post. Thank you.


 

I walked 29 km today for Brianna Sutton

brianna-mike
“If I decide I want to go out because I’m having a great day, I have to plan the next day around the fact that I know that it won’t be a good day.” 
Today’s story is from Brianna, my daughter.
When were you first diagnosed with Fibromyalgia? 
2010
What was your life like before you first fell ill with FM? 
I don’t really remember.
I was 13 or 14 when I got diagnosed, and I’m 19 now, so most of my formative years have been spent managing the condition.
What do you miss the most since having FM 
Being able to just go out and do something, like a night out, without having to factor in how many days afterwards I’m going to need to rest to recover from it. Or being able to tell someone I could go and do something with them, and know that there was a 95% chance I wouldn’t get ill and have to cancel, as opposed to it being likely that I would get ill and have to cancel.
Describe your worst day with FM 
On my worst day, I can’t get out of bed. It’s like my bones are made of cement and feel really heavy, and every nerve ending is hypersensitive so it takes a lot of effort to move and it hurts a lot when I do. My eyes will be super sensitive to the light too, so I can’t keep them open for long or I’ll get a migraine that won’t go away until maybe 2 days later.
I struggle to eat without getting nauseous, and so I basically will just have a liquid diet on those days. And I’m exhausted, so the majority of my day will be spent falling in and out of sleep.
Describe your best day with FM
On my best day, I can do normal things, I can go out to a play or to a concert or for a night out. But it can never be a spontaneous trip with no consequences. If I decide I want to go out because I’m having a great day, I have to plan the next day around the fact that I know that it won’t be a good day.
If I’m having a good day but I have something important that needs to be done the next day, then I can’t go out or exert myself very much on the good day, because I know it’ll leave me struggling for the next day.
What would you *most* like the world to know about living with FM 
That it’s not in my head.
Because they’re invisible illness’ and affect different people in different ways, people that don’t understand it, think that you’re making it up or overreacting. They don’t understand that as a result of the Fibromyalgia, I also have a heart condition, general and social anxiety, I had a year where I had a migraine for around 330 of the 365 days. They don’t know what causes it, which means it can’t be treated. They can’t predict what symptoms each person with it is going to present, so they can’t give out set ways to manage it.
Some people may get more musculoskeletal problems, where others might have problems with their joints, and others may have problems with their organs. It presents itself differently in everyone, and just because someone may not be in a wheelchair, making their situation visible to you, doesn’t mean they aren’t struggling through a lot.

This dedication is part of Mike’s Camino de Santiago walk.
Read why Mike is walking 255 km for ME/CFS/Fibromyalgia.

Please consider supporting important research by making a donation to my JustGiving page and definitely share this post. Thank you.


Today I walked 20km for Joel Langton

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Joel Langton is my best friend and he’s the first person I’d like to dedicate my walk to.

This is his story:

When were you first diagnosed with ME/CFS/Fibromyalgia?

2009

What was your life like before you first fell ill with ME/CFS/FM?

Full and fulfilling. I worked hard doing a job I loved with people I enjoyed being around. I was young and fit and healthy and I enjoyed life – nothing was beyond me and I had lots of plans and I was carrying them out.

What do you miss the most since having ME/CFS/FM

I miss the feeling of full lungs while running, enjoying a cool beer with friends on a summers day, being able to access my intellect, being able to leave my house for a meaningless stroll. I miss playing with my daughter and seeing family and friends. Most of all, I suppose I miss that feeling of peace that I didn’t realise was even there before; you only notice it by it’s absence once it disappears. I would give anything just to be able to sit there and not have symptoms bombarding me non-stop, that would be pretty special.

Describe your worst day with ME/CFS/FM

My worst day comes too often. I get through it by remembering my best day, which is usually just a few seconds of “almost peace” that comes out of the blue once or twice since I got ill. These seconds remind me, briefly, of what it feels like to be normal, and if I tell myself I will experience this again, even if only briefly, then that can help me get through my worse days. Worst days tend to merge into weeks, months, sometimes years and time sort of loses its meaning. The experience is intolerable, you don’t survive it intact but feel your essence of “self” dissolving away, and you don’t get it back, you simply keep going because some still remains somehow.

Describe your best day with ME/CFS/FM

Apart from those moments I describe, which are bitter-sweet because they are so fleeting and then you miss them, my good days are not measured by symptoms but rather by small victories in other ways. A piece of research that might actually lead to recognition and treatment, hearing that someone is praying for you and cares deeply that you are still sick, the exposure of the bad quality “science” that has plagued the disease and negatively impacted on patients, the visit of a true friend. Small and infrequent things that happen despite the disease.

Describe your typical day with ME/CFS/FM

Empty. Every day is about survival. I am mostly housebound and it’s about making it through another day in the waiting room for research to find a treatment that gets you part of your life back. I wake up and spend my day waiting to get to bed time so I can go to sleep and although I wont sleep well at all, have the hope that tomorrow is a better day somehow. I want to do so many things, but can do so few.

What would you *most* like the world to know about living with ME/CFS/FM

It is unfathomably bad, much worse than it looks or you can imagine. If you experienced it for one day you would never be the same again, it would become your priority even if it disappeared as quickly as it came. The world needs to take action and it can. This disease has had far less science done on it than any other comparable disease, the answers are just waiting to be found and probably aren’t all that hard to discover, it just needs appropriate funding and young researchers to bring their ideas and enthusiasm to the table. If that happened I would be the last generation to suffer this. If not then it will happen to our children and no one is immune, it is purely luck who gets it.

Anything else you would like to share?

My friend Mike doing this walk is the best thing that has happened to me since I got ill. It means a lot to me, I am very grateful and pleased it is happening.


This dedication is part of Mike’s Camino de Santiago walk.
Read why Mike is walking 255 km for ME/CFS/Fibromyalgia.

Please consider supporting important research by making a donation to my JustGiving page and definitely share this post. Thank you.