#SpoonieRunning - A Journey From Couch to 5k: Week 8

Monday 14 April the start of a new week and picking up the challenge.

I really wasn't feeling that great last week and was wondering if I should just stop altogether, but I am stubborn and I want to finish the plan even if I cant keep it up.

I woke up on early on Monday morning and felt good, like I was getting back my natural rhythm but even so I had to talk myself into getting out of bed and out for a run.

I had got my running stuff set aside the night before so it was my plan. In my head I thought that I would start back on Week 4 of the plan and I think that was a huge part of my stumbling block. I felt like I was stuck there and I just couldn't face the thought of doing Week 4 again.

To progress each week you need to have completed each week of the plan, that means going out and doing that weeks run 3 times. Technically I had done Week 4 (ok so it was spread over 3 weeks and the last run wasn't completely finished), but I decided if starting on Week 5 of the plan was what was going to get me out then that's what it had to be. I knew that I needed to try and that I could go back if I needed.

So Week 8 of my journey and the start of Week 5 of the plan (yes I know its a little confusing).
Week 5 is split into three different runs

Run 1 (Monday) - 5 minutes running, 3 minutes walking, 5 minutes running, 3 minutes walking and the final 5 minutes running (warm and cool down are 5 minutes of walking)

I survived. I found it easy. In fact I found the walking intervals too long.

Ferd keeps my company during my runs

What was more amazing was that I only needed to have one knee tapped up, so its working its helping to build back muscle tone.

Yay go me and my body.

I even treated myself to some new running leggings - a bargain from Lidl in the reduced section, the last pair and under £5

Well I had to try them 

But then came the Fall....

I had to retreat back to bed as I could not longer stand up and could only manage minimal use of my brain. It left me reduced to tears and feeling like a failure.

I was finding it hard to reconcile the two halves of me - the disabled sick me and the disabled fighting me and I wondered if I had already reached and past my breaking point.

I am the paradox by this point my stamina and general wellness should have been increased but as I have said I have M.E and while yes my stamina in terms of how far I can go has increased I was wondering if my general wellness was actually decreasing and if I would be able to go out again.

But through the support of friends and my husband I realised I have had this horrible disease and battling it for over 14 years - wow that's a long time - and I am not done fighting yet.

Run 2 (Wednesday) - 8 minutes running, 5 minutes walking and 8 minutes walking (warm up and cool down 5 minute walks)

So yes I did mange to get out again. I had a rest day as part of the program and I got my running kit laid out ready the night before and just decided to see how I would feel in the morning.

Queue really rough night. Sleep disturbance comes with M.E. At around 6.30 am I decided that sleep would be the best option and another rest day.

But....
I woke up at 8.30 and decided why not give it ago. The dog needed his walk anyway and I figured if it was too much then I could abandon the attempt and enjoy a nice walk.

I did it, I managed. The first run was ok and hello 8 minutes :) but the second run I really felt those last few minutes halfway through it really felt like I had hit treacle but I slowed down and kept going.

As with Run 1 of this week it resulted with me back in bed, I was simply unable to support myself upright and the following day again retreated back to bed only a few hours after getting up.

Run 3 (Friday) - the big one 20 minutes running (warm up and cool down 5 minute walks)

I debated about having another rest day before attempting this run, I thought about repeating Run 2. But then I decided to go for it and see what I could do.

I thought that I was going to have to abandon the attempt early on my knee was giving me some issues but it soon settled down.

So 20 whole minues of running eep.
5 mintes woohoo but I totally knew that I could do that
10 minutes yay
15 minutes I'm running
Then I get told only 2 minutes to go and that's when I hit my wall, but you know what I did keep going.

Big, big grin on my face - take that M.E, wonky joints and chronic back pain.

umm yeah I lost an ear gel

The rest of the week was spent basking in the glow of my achievement and largely in bed. But I did it, I can't believe how far I've come.

Please note:
I don't want people to read this and get the wrong idea and think ME is made better through exercise. It isn't. I know my body, I know when and where I can push or try to push my limits. I know that I have had periods when this would have been lunacy and would have made me worse and jeopardised my future.

Please don't use my experience to try and push someone who it isn't right for or they are not ready as it could further damage their health.

For people with chronic illness/disability exercise and making a positive change doesn't have to mean getting all sweaty there are many simple stretches that you can do in a chair and some that can even be adapted to do in bed (search chair exercises for limited mobility), but again I urge caution it is not right for everyone. If you or someone you care for do decide that you/they want to try and increase fitness my advice is always to consult with your doctor first.

Previous posts:
#SpoonieRunning - A Journey from Couch to 5k
#SpoonieRunning - A Journey From Couch to 5k: The Journey So Far...

#SpoonieRunning - A Journey From Couch to 5k: The Journey So Far....

The Couch to 5k plan that I am following aims to get you running 5k (or 30 minutes) over a nine week period, but that does not mean that you can not stretch it out longer if you need to.

Week One (24 February) - Week One of Couch to 5k Plan
Track suit bottoms on, zip top, trainers laced up, dog hitched up, ipod turned on and off I went on run number one.

I survived.

I then did it again and again.

Each week consists of runs and rest days. In total each week you only have to do the hard running bit 3 times. Now that doesn't sound to bad does it and rest days total nailed them :)

Actually I found week one pretty easy. But I have to confess I didnt start this plan from the couch I had been giving running a try on and off during the previous year. Mainly off as I was inconsistent.

I also invested in a lovely pair of Nike Legend Track Pants.

I found them in TK Maxx which did mean that I couldn't be picky about leg length so being too long its great that I can sew:

see how much I had to cut off 

They are really comfy and more importantly have been keeping me warmer than my legging.

Week Two (3 March) - Week Two of Couch to 5k Plan
I survived week one and started week two with the same ease.

I am not saying running is easy just over the course of the previous year I had obviously done something right (it was hard when I started and the thought of a minute was an eternity). I think my baseline level of fitness was probably at this week.

But still it was an amazing achievement to finish as for me it meant two consistent weeks, whereas before it was this consistency that I was struggling with.

Week Three (10 March) - Week Three of Couch to 5k Plan
And now the real test began as reps this week included a 3 minute run. Three whole minutes non stop. It was harder than the previous weeks but I did it.

Then it came to run 3 of the week and I didn't complete the final run, I was one tiny little minute, 60 whole seconds short. I had been complaining that my lungs were hurting, its something I have battled with before and always assumed that it was due to the bad chest infections I had a few years ago. But my peak flow was fine and I think what actually was happening was inflammed ribs. But I just couldnt push through the pain on that last run and enough was enough I decided it was better to stop.

Along side this I had also been getting a mild sore throat, a classic sign that my body is not happy with what I am doing with it.

But no that wasn't enough to contend with, I had to slip.

I prevented myself from hitting ground (you know where you kind of fling and contort your body to keep balance) and in the mean time I heard something in my foot snap.

No mobile phone. No one around. Just me and the dog.

I could weight bare and I gingerly hobbled home stopping on a few occasions to double over and cry with pain - I was very thankful of my huge sunglasses. I got home took my trainer off and thats when I cried out loud as I could no longer weight bare and contemplations of A&E were running through my mind. Mr Mouse helped me to the sofa so I could do basic assessment.

Not broken, no swelling, just ankle no longer support foot in correct position. So wonky joint issue. After a little rest I was able to make it upstairs.

And this was the result:
Left Ankle needed support to hold it back in alignment and sprained
Right Ankle sprained
Left Knee wobbly
Right Knee not so wobbly
Left wrist sprained

at least I was colourful 

Week Four (17 March) - Rest
Well what could I do other than rest. And generally I did start to feel better. Not 100% but better.

Week Five (24 March) - Week Four of Couch to 5k Plan
So with the sprained bits all ok I embarked on week 4.

Run one I survived.

Post run one not so good it was clear I needed way more rest. My throat was sore complete with gunk running down the back of it, I hurt and I was sleeping for England.

Week Six (31 March) - Week Four of Couch to 5k Plan
And starting week four again.

I managed to almost complete week 4.

I did two runs but my final run was ended a little early due to knee pain.

Week Seven (7 April)
Another week of rest again just so tired that I couldnt do anything but listen to my body and its need for rest.

Previous posts:
#SpoonieRunning - A Journey From Couch to 5k

#SpoonieRunning - A Journey From Couch to 5k

If you follow me on Instgram then you might have noticed me mentioning SpoonieRunning and my attempt of couch to 5k (which is 3.1 miles for people like me who dont understand these new fangled measurements).

So whats the deal and what is a spoonie anyway?

First off the term spoonie comes from the excellent spoon theory and is a way of explaining chronic illness to people. You have a set number of 'spoons' a day and each activity costs a spoon so you have to decided what activities you are going to do. Of course you can borrow one of tomorrows spoons but then that will obviously mean there is a knock on effect.

So what makes me a spoonie?

I am disabled - I know that shocked you a disabled person running! How?

Most people assume that disabled only mean mobility impaired and someone in a chair and unless its an Olympic games year disability in sport is not something that is in the mainstream.

Not all disabilities are visible and not all disabilities cause mobility impairment that requires aids.

I have a complex set of chronic conditions, I have blogged about them before, I am very open about my illnesses. But here is a quick run down of a few (yes a few I do have more):
ME (myalgic encephalomyelitis) - I have had this for many years gone through different stages and flares, I am one of the lucky ones. For me it means I suffer cognitive issues (brain fog), fatigue, recurrent sore throats, headaches, sensitivity, pain to name just a few. But here is the rub a big part of ME is post-exertional malaise - this isnt normal tiredness and it does not normally develop until the following day and can take several days to improve.
PCOS (Polycystic Ovary Syndrome) - for me I get what I refer to as Hell Periods (gut twisting, nausea, dizzy I just want to curl up and die pain), but also it comes with other stuff like increased risk of stroke, diabetes and difficulty in losing weight.
Chronic Back Pain - well you know, what it says on the tin.
Wonky Joints - I have a lot of joint issues but the ones I moan about the most are my knees. They are hypermobile and the kneecaps have a habit of becoming misaligned (basically sliding out of place) and therefore they dont track properly and cause pain.

So why I am doing a couch to 5k running plan?
Simple keep moving to keep moving.

A few years ago I got pretty bad my ME was spiralling out of the realms of control and then Easter 2011 my back went into spasm, ok I thought I get back pain from time time normally a bit of heat rest, painkillers and it goes away.

Not this time.

Collapsing on the floor and being stuck down there and having to call paramedics out to get me up was not on my list of fun things to do on an Easter weekend.

Progressively my back got worse. It then seemed to ease off a smidge and then went back into major spasm and nothing would help. This and trouble with work sent the ME way out of control and I had a major anxiety episode (all things I've blogged about before so I am not going to rehash the past).

Anyway initially I was told there was nothing I could do to help my back other than keep taking the cocktail of medication I was on to keep the spasms manageable. My mobility had gone right down to somedays barely being able to walk a few steps unaided and others I could manage a little further while holding back tears. And that's when I got offered a place on a local NHS run course for suffers with chronic back pain. It was a different approach combining physio, pain management, understanding medication (already had a pretty good handle on that one) and group discussions (you know the you are not alone methodology). For the first time something really clicked and it helped. Also a big plus point was the nurses and physio running the course understood about my ME and the physical aspects were very much tailored to what you could do and they helped me to assess other ways of doing some of the stretches so I wouldn't cause additional pain to my knees.

Following on from that I plucked up courage to ask the doctor for a physio referral for my knees (I'd not had very positive results before) - then my neck and then my hips. Suddenly physio made sense and I could see and feel the benefits - the right physiotherapist really does make all the difference.

Through this process I have learnt that I need to keep my muscles strong to support my wonky joints and thus it reduces the pain. But also my pain increases and mobility decreases as soon as I 'stop' for a period time.

It all comes back to the I need to keep moving to keep moving. But while doing this I also have to balance my complex health needs.

I know that I am in a good place health wise to try this, my ME is more undercontrol and with all the previous physio I know that slow and steady works and I also know if and when I need to take to take a break.

I also dont want people to read this and get the wrong idea and think ME is made better through exercise. It isn't. I know my body, I know when and where I can push or try to push my limits. I know that I have had periods when this would have been lunacy and would have made me worse and jeopardised my future.

But at the same time I don't want people who have chronic health conditions to think that simply means they cant do it. Exercise and making a positive change doesn't have to mean getting all sweaty there are many simple stretches that you can do in a chair (search chair exercises for limited mobility). If you do decide that you want to try and increase fitness my advice is always to consult with your doctor first.

So I am following the NHS couch to 5k plan this seemed like a good solid plan to start with well documented results also I dont have a fancy phone that will run all the current fitness apps (zombie run really appealed to me) so old school podcasts was fine for me.

And so I started.....

Real Life

So this post has been sitting in my drafts box for a while. I couldn't finish it as brain fog was making it impossible to keep my train of thought and then I have had another rough patch, I just had to concentrate on what I could do for a while, creating and a bit more creating and the awesome discovery of metallic sparkly acrylic paint :)

I wanted to write a snap shot of my life, I think it can be hard for people to understand chronic illness. You are 'seen' when you are 'well' and all the other bits are behind closed doors. And my realisation that even now I hide things when out in public.

So this snapshot was from last month starting Thursday 18 October:

I have had a lovely weekend and it was spent with amazing people, some who I have met before and some who I met for the first time. Since I joined twitter I have got into contact with lots of people who have ME and other conditions and through the vision of one person the first met was organised and it was truly an amazing event for the first time I could be around people and I didn't have to hide symptoms. If I couldn't deal with noise or talking, it wasn't a big deal. If I needed to step away I knew that would be fine. When the second meet was talked about I jumped at the chance to do it all again. 

But it has made me really notice that I do behave differently when I am around people that understand and so sometimes I wonder if 'normal' people think that I use ME as an excuse, if I am really ill and disabled. Or they just think oh that's all about fatigue isn't it? We all get a little tired sometimes.

I look normal and there are occasions where you might notice that I am obviously in pain and walking slowly (ok more a sort of shuffle, with occasional little squeaks of pain that have escaped gritted teeth). I don't have any mobility aids (though I believe there are occasions that I should be on crutches). The only thing that you might notice is my Medic Alert bracelet. 

But of course when you see me then I am 'ok'. As in its a good day/period and/or I am seriously masking some of the effects of my ill health. I put on the smile, the mask. I concentrate on what I am saying and often you will notice that I don't take part in conversations, not because I am not interested, or don't have anything to say. But because by the time I have got the words ordered in my head the conversation has moved on and I have missed the opportunity, it is very frustrating. 

You might be thinking well then that's my failing I should make more of an effort. Its hard and when people see you stumbling for words they often want to 'help' offering suggestions which just makes me more muddled. Sometimes I slur and get lost with my train of thought and that again has its problems. I get wobbly, I get dizzy, I don't always cope with noise. I'm too hot or too cold. Going out can often feel like an assault on my senses.

I go out when I am well 'enough' or I take that calculated risk of the benefit over the consequences.

Its a different story in private and when I am at home.

So a snapshot of my life. Hopefully it will give you a little understanding. I don't choose to be this way. 

Thursday:

Easy day and early to bed as I knew that I would be travelling to London on Friday.

Friday: 

Woke early, baked an easy make cake for Mr Mouse as I was leaving him home alone for the weekend. 

Packed, had a rest. 

Mr Mouse helped me to sort out the car and loaded my luggage.

Set off, with a planned stop for a break and timed that I would get to the hotel in time for a rest, have dinner and then a gentle evening with early night to ensure I was rested for Saturday.

The journey should have taken 2 hours instead several accidents meant that it took about 6 hours.

By the time I got to the hotel my head was buzzing, my legs ached and my anxiety levels were way up.

Hotel room too hot.

Sleep was limited.

Saturday:

Made sure that I ate good breakfast.

Made our way into London.

Meet up sat around talking over lunch.

Made our way to a museum.

Meet up in cafe, struggled with noise. Then a pianist came along, I love music, I love the piano but this was just the last straw as it made me feel like my ears were bleeding. We retreated to the galleries of the museum.

Made our way back to the hotel for a quick rest before dinner.

Still struggling with noise and tired. 

Struggled to eat and hadn't read the menu properly - didnt notice the word spicy 

Back to room, dizzy head spinning and stomach cramps.

Sleep.

Sunday:

Woke much later than planned.

Made sure I ate breakfast but struggled with mild shaking and took a long time to even eat a small yoghurt - due partly to energy and struggling to keep swallowing - body was not really interested in food.

Journey home was split into sections. Part one was a short drive to my Dads and then a long rest, then another visit to a family friend for another rest before the final drive home with rest stops planned into the journey. Thankfully no issues.

Arrived home.

Mr Mouse took luggage out of the car.

Mr Mouse made me tea.

Mr Mouse helped me to get into jammies.

I then started coughing.

And some more coughing.

Then more coughing and the taste of blood.

Then more coughing and lung crushing.

It took a few doses of steroid inhaler (left over from last chest infection) to get breathing back under control and I was very close to having to call paramedics.

Severe steroid shakes.

Sleep.

Monday:

Woke up.

Cough...

....Cough ....Cough 

Breathless and exhausted. 

Throat feels bruised

Doctors.

Lungs thankfully clear (I dont want another chest infection), fresh inhaler prescription.

Over done it. 

Bad case of dizzies leaving doctors, little old lady checked if I was ok.

Didn't have the energy to go to chemist, came home.

Mr Mouse had to look after me, I couldn't get about as moving caused coughing and breathlessness. Was also at risk of falling.

Tuesday:

Throat still bruised.

Slight cough

Slightly breathless when I move about.

Headache.

Earache.

Head buzzing.

Neck grinding and stiff.

Legs hurt, feels like waves of fire.

Very dizzy.

Struggling to write this post have had to stop a few of times.

About to snuggle down, sitting up is starting to become intolerable.

Another day where moving about was interesting and fingers were crossed that I don't fall or bump into anything as I didin't really want a sprained 'something' to add to the list.

So that is my reality there are costs to be paid if I want to go to do something that I am sure a lot of people wouldn't even give a second thought too.

I have had a pretty rough month including some side effects of meds, period pain, extreme pain and the lowest moment I just everything to go away.

But though all that there has been joy, creating and sales :)

And Christmas is on its way everyone.....

Hello Lovely People

Wow so again I have had an unintentional break (more photo a day pictures will be coming).

I sort of lost my blogging confidence after a comment during a meeting to get back to work. It really threw me and I am sure that I took it way out of context as I can sometimes have a skewed view of things due to the anxiety.

But just to today I stumbled across a link to my Folksy V Etsy post on a facebook comment a chance encounter and it got me to think again (and a new post about that will be coming). I knew that I would be coming back I do love blogging and I have received so much support and encouragement to help me through especially during my melt down and having to re evaluate and re learning about my complex health issues that mean I am disabled - not that you would ever know from just looking at me.

So what it happening in the world of Mouse?

I am now getting back to the desk job, completing a phased return and requesting a reduction in hours to see how I go. Its important for me to work but for a long time I placed far too much importance on work (as in the desk job that gives certain financial security) this was fuelled by a bad personal experience of the benefits system years ago and knowing that the situation is even worse now. The reality is that I could lose my job because I am incapable of sustaining attendance and therefore by default incapable of doing the work (an employer can not keep someone on indefinitely on the off chance that they maybe able to work the odd day here and there and I would not expect them to) but I would have a very hard time getting sickness benefits I would be found 'fit' for work despite being potentially 'unemployable' due to ill health disability - so yes the current system for people who really need help, understanding, care and sometimes a big hug is very hard. 

I was in a situation where I was living to work - yes I was able to work full time and afford all the things I wanted - new clothes, new shoes, new Radley - but I rarely went out, did things, my life was work, come home, cook, eat, sleep, pain and repeat - and my health since then has declined. 

I love creating and I was even find doing that difficult as I was just too tired, in too much pain, couldn't concentrate. 

But now I want balance I want to work to live and yes LittlemouseLilly is continuing and growing. I love my Mouse world and the dream is that Mouse will give an income so that fingers crossed in time I wont have to go to a desk job. Mouse work for me is easier to fit around my health needs I can work and rest when I need which is obviously more challenging with a fixed desk job. Mouse work is also not really work (yes obviously there are the serious bits eek Tax Return etc) but Mouse work is really life to me its a huge part of me and I need the creative outlet. 

So at the moment I am working out that balance and I am sure that I will make mistakes along the way - but that's how we learn. 

And of course I am continuing to create lovely things - 

New prints coming 

Beautiful jewellery 

Lovely cushions

And a lovely wedding commission

And I can still be found in all these places:
Etsy
Folksy
Facebook
Twitter 
Blipfoto

ME and Fibromyalgia Awareness Day

Today is the International awareness day for two devastating diseases - ME (myalgic encephalomyelitis) and Fibromyalgia.


I have ME, I have had it for 14 years and counting. 


I have a chronic illness, I am disabled - I have recently been told (by the Disability and Employment Officer who is going to help me return to work) that I need to say that more - I am disabled. I have never been afraid to use the term, its just I tend to refer to my chronic illness rather than my disability.


ME took away the opportunities of youth. While I should have been going out, having fun, experimenting, I was trapped in a body on fire with pain, barely able to stay awake. When I did manage to do something 'normal' what people didn't see was me afterwards behind closed doors in tears. 


I was the subject of village gossip (I wasn't really ill, I was taking advantage, I was lazy...). Even the system that was meant to help me didnt understand and I was branded a lair at a benefits tribunal.


No one would lie about having ME.


Those early years I was pretty much bed bound. I was fiercely independent and would manage personal care (well what teenager really wants their Mum to help them to the loo) but this would leave me unable to do anything else. I was lucky I had my parents to look after me. If I had been alone then I would either still be bed bound or I simply wouldn't have survived.


My life is a balancing act. I have regained the ability to do things to an extent. Because of my traumatic dealings with the benefits system I decided my only chance at life was to find a job that would be flexible, I knew that wouldn't be possible with mediocre A level results. I never thought that they would get me into Uni but they did because I also had something else - life experience (it took 2 years to regain enough health to go to uni). Who knew that ME would be life experience. I was able to study because I didnt do normal student things. I couldn't go into Halls (I wouldn't have survived). I didn't go out and the key was being upfront with the Uni - I went as a disabled student. I went to a uni that taught modular course so holidays were my time nothing was carried over the terms. The uni had terms - set blocks and I was able to pick my subjects - we had the core ones but others we could pick and choose meaning I could build my timetable. It was hard, I had to change half of my degree because I could cope and I missed bits (ok I missed pretty much the whole of my last term) but I got through. 


I went into full time work. Now I have coped with full time work. I could cope again but I am realising at what cost. I have been living to work rather than working to live. 


I have companion conditions to ME. I also have IBS and I suffer from Raynauds. In addition I have PCOS and various joint issues, and a chronic back problem (I believe they class it as mechanical failure now) yep I am falling apart. I realise that my body has been on a downward decline because I have been abusing it, not giving it time to repair properly, and because I have been trying to do too much. 


I thought I knew how to deal with my ME and I did, somethings I did right, somethings not so right. But what I haven't taken into account is changes over time and re-learning how to deal with things. I havent really been listening to my body - its taken some pretty serious chest infections, paramedics picking me off of the floor, being barely able to walk and a serious episode of anxiety to make me listen. 


I was really lucky to have been given the opportunity to attend a back and pain management course and I learnt loads about pain and pain management. But I also learnt that most of it I already knew I just didnt have confidence in my knowledge. 


So what is ME?


This is information on a leaflet called explaining ME to people that I have got from the ME Association.

• ME is a disabling illness although the visible signs and restrictions that people normally associate with being disabled may not always be obvious. Some people with ME often look well
• ME can be characterised by severe symptoms that can be made worse by minimal physical or mental exertion
• The severity and symptoms of ME varies from person to person
• ME can vary for day to day and even throughout the day. It can, on occasion, vary quite suddenly - from near normal health to feeling very ill and exhausted
• Sometimes a persons health can deteriorate quite rapidly, leading to complete exhaustion
• The onset of other symptoms can come on just as suddenly.

These are just some of the symptoms I have:

• Chronic fatigue - most of the time
• Pain in my muscles - most of the time
• Pain in my nerves - most of the time
• Muscle spasms - some of the time
• Cognitive dysfunction - all the time
• Dizziness and balance problems - some of the time
• Headaches (including migraines)  - all the time
• Sensitivity to loud noise - all the time
• Sensitivity to bright lights - all the time
• Pins and needles - some of the time
• Sensitivity to smells - some of the time
• Hypersomnia - some of the time
• Insomnia - some of the time
• Poor quality sleep - some of the time
• Unrefreshing sleep - most of the time
• Cold hands and feet - all the time (I have raynauds)
• Sore throats - most of the time
• Enlarges glands - some of the time
• Allergies to drugs - all the time 
• Allergies to chemicals - all the time
• IBS - all the time
• Nausea and sickness - most of the time
• Eye problems (dry eye) - most of the time (summer) some of the time (winter)

I am also intolerant to sunlight and possibly UV light - but its hard to get doctors to understand that strong sunlight makes me sleepy and the after effects of being outside makes me feel like I have a low grade fever and really unwell, as its worse during the summer I believe I have a UV sensitivity. 

The list would have read a little differently 14 years ago - pretty much everything would have been - all the time.


There are more symptoms that I could add.


To find out more about ME click here or google there has recently been a good newspaper article read it here


I am one of the lucky ones - while I will not recover I am better than I was I have a chance at life. Please spare a thought for those who are trapped in their bodies - drowning in a sea of pain. I had a glimpse of that world and I am terrified of going back. Its pain that I would not wish on anyone.


ME is real.
ME is not in my mind.
ME needs to be taken seriously.
ME needs proper research.
ME needs understanding not scorn.