I was diagnosed with severe M.E. over three years ago, when I was 29, after a bad bout of Epstein Barr Virus which my body just couldn’t recover from. My symptoms are like those of any M.E. sufferer (the earth-shattering, debilitating fatigue; the turbulent ‘brain fog’; the aches and pains and bouts of flu-like symptoms; the wildly fluctuating body temperature, etc), but they can be brought on by even the very smallest ‘activity’, like eating a meal, which is what makes me categorised as ‘severe’. I’ve been housebound since July 2016.  I consider myself lucky not to be totally bedbound, because I can move around the house a little and on most days I can even get out into the garden. But I can’t sit or stand for more than a few minutes without going completely dizzy and lightheaded and risking bringing on a huge wave of fatigue, and it is this symptom which makes my life so limited. I have to spend the vast majority of the day completely lying down. I rest, I meditate, I listen to audiobooks, I dream and plan the novels I will write when I’m eventually well enough.  If I’m really feeling well (generally about once a fortnight), we bundle me into the car (seat tilted back so far it’s practically horizontal, so I don’t get lightheaded) to get to the park at the end of the road, where I can lie out on the grass to enjoy the wonderfully restorative feeling of being out of the house. I’ve just had to resign myself to being that mad lady who lies down in the park, even in the middle of winter… Clinging on to your dignity is a futile and energy-wasting endeavour when you have M.E.

It’s a strange life and not always easy.  People are always saying they don’t know how I do it.  But the truth is that you learn to adapt, because you simply don’t have any choice. Yes, there have been times when I have been mired in frustration, wanting to rant and rave at the universe.  There have been moments of terrible and overwhelming darkness.  I have been scared and hurt, angry and bewildered, vulnerable and lost.  Being so physically dependent on another person makes you feel extraordinarily exposed, like a beetle on its back, unable to flip itself upright.  But I want to be as happy as I possibly can within the limits my life has set for me, and it is still full of love and joy and laughter.  These days I think of my life as a bit like being an elderly cat.  Resting in bed, resting on the sofa, resting in the sunshine in the garden, not up to much but still being cared for and loved.  My life may be different from yours, but it is no lesser.

I’ve lost a lot of my more peripheral friends as I simply don’t have the energy to keep in touch with a lot of people. But my family and my core friends have been wonderful and although I don’t get to see or speak to them as often as I would like, in a funny way I think we are closer than ever because their support has meant the world to me. It has been transformational for my relationship with my husband, because we quickly learned that we faced this together, or not at all. Going through this has been a huge challenge but has brought us incredibly close and we manage our strange new life with as much humour as we can. I can wash and dress myself but he often has to dry and style my hair, which is both a penance and a joy because I can’t sit upright for that long so he has to dry my hair while I lie horizontally on the bed and hang my hair down the side for him to reach. It is the cause of much hilarity and often ends in fits of hysterical giggles at the monstrosities he creates.  M.E. is make or break for relationships of all kinds and those that you keep are all the more special for it.

There is hope for the future. I keep as informed as I can on all the latest M.E. research and it’s taken three years, some bad experiences with ignorant medical professionals and a lot of false starts, but I have finally got the right team of health professionals around me and for the first time since I’ve been ill I’m actually making progress.  It’s been tiny, baby steps, snail’s pace progress, but it’s progress nevertheless. The mere fact that I can write this at all is proof – just a few months ago I could never have dreamed of holding onto a cognitive thread for this long. There’s always hope, and there’s life in the old cat yet.

Miranda Gill, August 2019

The post Severe M.E Day- Miranda’s Story first appeared on ME Foggy Dog.

I’d like to share the love about Team Foggy’s friend Retha Viviers. Over the past year or so, Retha has become a close confidant and someone to bounce ideas off. She is also the reason I became aware of the dictaphone option on WhatsApp. We use that function to communicate as typing is usually far too tiring!

I want to help to raise awareness of her story, why she set up the ME CFS Foundation in South Africa, and how we can help her in her efforts. This is the first of a number of blog posts about M.E in South Africa, as told by Retha Viviers.

This is Retha’s M.E story.

My name is Retha Viviers. I was born in Johannesburg in South Africa. I am happily married and have 2 lovely daughters; aged 26 and 18 years old.

I studied quite a bit at University and enjoyed working. I started in Marketing Research, moved onto Business Analysis and later became co-director of our own business providing different services in the petroleum and later on the security industries.

I always had a lot of energy: I used to love: dancing, camping, hiking, socialising, doing things on the spur of the moment, playing and swimming with my children, reading, etc. I was outgoing and loved talking to people. We lived at the coast when I underwent a fairly big stomach operation in 2002.

My life was about to change …

The expected recovery time for my operation was 6 weeks; however, months after the operation I still couldn’t build any stamina, I knew something was wrong. I started getting viruses all the time and struggled waking up in the morning.

My health deteriorated and during 2004 I was eventually diagnosed with Myalgic Encephalomyelitis (also referred to as Chronic Fatigue Syndrome) – hereafter ME/CFS. I was fairly fortunate in that I could still continue working up to 2008.

However, at that time I could no longer drag myself through the day. Long before then, the activities I so much loved became a MEMORY, no more dancing, hiking, playing and swimming with my children, etc.

I had to face the fact that life as I knew it was completely over. I finally had to accept that my body was broken.

Having ME/CFS is a difficult life, but when my oldest daughter contracted a virus which attacked her heart and ME/CFS symptoms started our family was literally devastated. She had to leave school and continue with her last year of school via homeschool. Her dream of becoming a doctor was shattered; this was 9 years ago. She started reading medical books by the age of 12 and that was the only field which interested her, it was her passion.

Watching her missing out on life a young person should be living breaks my heart!

Personally, ME/CFS came at a big cost to my family and I but I have also gained in unexpected ways. From a cost point of view, I’ve lost the ability to earn an income, which ruined us financially as I was supposed to become the main breadwinner, my husband is 15 years older than me and he was going to be the househusband, take care of the children by scaling down his involvement in our business. Due to my illness and two projects which went south we lost our house and all our life savings. My husband worked as an engineer but was close to 60 then and couldn’t find a position as South Africa gives preference to previously disadvantaged applicants due to the terrible “Apartheid” system. My oldest daughter’s ME also added to our already dire financial situation. Touch wood my youngest daughter is healthy and is completing high school in November this year.

I’ve lost my identity to a large extent, and my memory and other cognitive abilities have deteriorated significantly. Physically I have become weak. Getting ME/CFS is like a jail sentence. The time you spend in your cell and how big your cell is depends on how severely ill you are. A cell can be your bed, a room, or your house. Leaving your cell comes at a high price and you risk the chance of a relapse. It is called post-exertional malaise (PEM).

ME/CFS is also an isolating illness. Telephone calls can be exhausting, so socialising is very difficult if not impossible. Going over your energy limit (some call it the number of spoons you have available to use per day) leaves you feeling very ill for a few days, if not longer, after an event. There is no room for doing things on the spur of the moment, etc. People need to understand ME/CFS is a disability; it is just the level thereof that varies. In terms of an ME/CFS disability scale, I am around 50 – 60% disabled.

From a gaining point of view, despite all the heartache and hardship, ME/CFS has enriched my life. There was a small ME Association in South Africa headed by the late Arlene Vermaak. She collected articles from across the world and issued a hard copy magazine quarterly. Arlene did a lot of work for ME awareness in South Africa but unfortunately died of cancer in 2015. As Facebook became a way to form online groups I started a support group on Facebook in November of 2012. It is also very difficult for ME/CFS patients to attend physical events.

Over the next few years, I became aware of the dire needs of patients for hope, companionship, financial assistance, medical treatment, special care facilities, and basic living necessities. This was pretty much the situation I was in as well. I have come across the most amazing people, very ill and in severe pain, but still very kind and as positive as can be.

The ME CFS Foundation South Africa NPO I realised something formal (and it had to be quick) had to be done for ME/CFS in South Africa and founded The ME CFS Foundation South Africa NPO together with my daughter (also suffering from ME/CFS). We are currently in the process to appoint our fifth director.

I found a new purpose in life, one of helping others in the same or worse situation we’re in. I function from home, sometimes on bad days from bed. I try to stick to my resting schedule, but there are still days where I am too ill to do anything. Knowing the suffering of fellow patients keeps me going and it has become my passion to make a positive difference in the lives of others with ME/CFS.

I have formed strong bonds with many fellow patients; some being extremely ill, many living in dire circumstances in need of urgent assistance. I will not rest until we have helped them. Each person reached makes all the hard work and sacrifice more than worth it.

We have patients in need of basic medical treatment, basic living necessities, accommodation, etc. At the moment there are no government disability benefits for ME/CFS patients in South Africa, to the best of my knowledge only one person has been successful applying for these and the amount is a mere R1 700 per month (₤90).

We have come a long way the (almost) past 3 years and have really progressed with raising awareness, educating the public and healthcare practitioners, helping patients getting diagnosed, assisting with basic necessities, counselling patients, providing support and hope through our online support group, was on several TV and radio programs and in a few newspapers/magazines, established relationships with awesome people (Sally and ME Foggy (with Kat) included), participated in small research projects, participated in #MillionsMissing , screened UNREST, etc. We are in the process of helping a ME/CFS and FM patient to be medically boarded by her insurer, this is a critical watershed matter and we HAVE to help her succeed.

However, we need help….

Fundraising is challenging in South Africa due to the ECONOMIC and POLITIICAL uncertainties and the current requirements by Government

We can issue Income tax receipts for donations for those living IN South Africa.

Retha Viviers

**** Foggy Followers, if you are able to help Retha and M.E/C.F.S patients in South Africa by donating to her charity, please click this link. The exchange rates make donations from other countries very beneficial.

Thank you.

The post Meet Team Foggy’s Friend and Founder of ME CFS Foundation South Africa, Retha Viviers first appeared on ME Foggy Dog.

My ME is ‘mild’; I still work full-time, but I have had to change jobs to achieve this. I used to be a college lecturer and departmental manager with a strict regime of hours and a backlog of work to be done at home, but now I work 9-5, 5 days per week in a role where I have reasonable control over my pace of work. On good days I can even do some housework, but generally I can’t and I have to rely on my husband to do all the chores, with weekends reserved for spending time together in the mornings and me sleeping/resting in the afternoon. Bed time is always 9pm.

The continuous aches and pains are the most irritating physical aspect of the condition for me, but I am finding the psychological aspects, the need to accept that past ambitions will have to be shelved, potentially indefinitely, actually the hardest thing to cope with. On a good day, I could take on the world; I can get up, eat breakfast, shower, brush my teeth, tidy the kitchen and be at work early with a cup of tea in my hand before 9am. On a bad day I get up, eat, go back to bed, get up, brush my teeth (sitting down, as standing is too painful), get dressed, sit down again then get to work sometime between 9 and 9:30. These are the days when I realise that ambition is something for the fit and healthy, and that I will happily settle for employed.

Life is not all doom and gloom though, and I am not as miserable as I sound. My life is much quieter than many peoples’, but it is happy. I am genuinely grateful for my ‘mild’ ME, because it is not ‘moderate’ or ‘severe’. For those of you out there who are not as fortunate as me, I am truly astounded by your bravery. Hopefully the future will be brighter for all of us, especially with awareness of invisible illnesses increasing, and I look forward to a time when being fatigued is understood to be a bit more than ‘overly tired’.

Mark

The post Mark’s M.E. Story – Guest Blog Post first appeared on ME Foggy Dog.

One subject that I am unable to talk about is that of M.E pain. It isn’t something I have any experience of….well, apart from a new development in the form of constant sharp pain in my little and fourth toes on my left foot (POSSIBLY M.E. relatedem>). This new pain does not make me an expert in M.E pain or how to manage it though! Anyway, earlier this week I was speaking to Ryn, a friend who I originally met through Foggy (she wrote a blog for Foggy during the first World Tour and Foggy rode her husband’s motorbike…bucket list!!) but who has gone on to become a true friend and confidante. I have discovered that Ryn is the perfect person to go to for love-life advice…she is determined to help me ‘see the light’ and to convince me that my ‘ideal man’ is out there somewhere. Yeah yeah. Anyway, back to pain…. I asked Ryn if she could write about her own personal experience of M.E pain. As I have said before, there isn’t a one type fits all description for any M.E symptom/experience, but this is hers.

Me and my M.E. / C.F.S.  pain

My pain is like varying levels of flu-like aches and pains which have been constant since I was G.P diagnosed with P.V.F.S February 2014 and later, a consultant confirmed a diagnosis of M.E/C.F.S./P.V.F.S  September 2014.

It is mainly joint and muscular pain and includes inflamed glands in my throat, armpits and groin. My pains are from my head to the tips of my fingers and toes. Sometimes it feels so overwhelming and never-ending, I can’t help but give in to self-pity, tears and frustration.  But so what? A good cry does me good! Thankfully, ways of coping with my pain have come to me with the support and ideas of people close to me and from the twenty years I worked in the healthcare profession.

When I can, I‘ll use ‘distraction’ as a way of dealing with the pain.  I’ll read my kindle (it’s back-lit so it’s perfect for my being light sensitive as I can adjust its light), or watch t.v etc.  Short visits from family and friends help, as does using social media…. when my head is clear enough from brain fog lol.   Feeling isolated doesn’t help my pain management. I generally take four pain relief tablets at a time, 2 x 30/500 Co-Codamol and 2 x 200mg Meptazinol – although together they can take the edge off the pain, it isn’t always enough.   At its worse, the pain down my spine radiates outwards.  I take my pain relief tablets and my husband rubs ‘Deep Heat’ into my back for me. As gentle as he can be, his touch / the application of the cream hurts me even more until it’s done, then I can rest and hopefully sleep the worst of the pain away.

Hot water bottles can be a true comfort to my joint and muscle pains.  I can’t make them up myself but if no one is there to help, I have a longer than average wheat bag (from Boots Chemist) which I can now often manage to heat in the microwave.  When I lay in bed (often on my side as easier breathing being Asthmatic), I use a pillow between my legs which takes the pressure and discomfort off my knees and ankles when they touch, skin to skin.   A ‘hot as I can handle it’ bubble bath is helpful too – I use a bath chair so can’t fully lay down and relax under the water but just to get the heat to my legs and hips seems to work wonders for them.   I use ‘Infa-care’ or ‘Sanex’ bubbles as are gentle to my skin.   A lightweight blanket/shawl wrapped around my shoulders or one covering my hips to my toes helps ease my pain too. I believe it’s the warmth they generate that alleviates pain.  In bed, when my legs and feet are cold and painful, I use an incontinence sheet under the bed sheet, under my lower body.  They are plastic one side and quilted absorbent paper on the other.  The heat builds up quickly and is a more gentle heat than a hot water bottle (B&M sell ‘puppy pads’ which work the same as incontinence sheets and a fraction of the cost).

My pain levels dictate what I can do and when. I can’t manage personal care as and when I use to or get out of bed when I’d like to. Today, it’s been a couple hours at least since I’ve been awake but my pain reduced enough that I’ve only just managed my shower – still using a shower chair as the act of showering is still exhausting and my balance not great! Pain levels do control what I do and when, 24/7.

I’ve always said ‘I don’t do pain’, maybe I have a ridiculously low pain threshold, I don’t know.  But it’s amazing the levels of pain you learn to live with because you have no choice and I will do/take what I need to help my quality of life. In the past, pain has knocked me mentally and emotionally sideways so I try not to suffer in silence anymore…..it really isn’t healthy. Sharing my pain (yes really!) has allowed others to offer me their support and own ideas on how to get through it, some of those ideas have worked for me so I’m very happy to be able to share them with you too J    Please don’t suffer alone.

Ryn xx

The post M.E. Pain – Describing the Indescribable first appeared on ME Foggy Dog.

Hello Foggy,

I would say my M.E journey has been a slow one because I think it started back in 2009 when I had decompression sickness after scuba diving. I never felt fully recovered and started becoming tired or ill easily and not able to concentrate as much.

I caught a virus in 2012 and became very sick, soon spending most of my time after work either sleeping or staring into space in a fog of confusion. I had the brain power to make it through work and get home and that was about it! In 2015 was diagnosed as having hypothyroidism and felt like my body was slowly shutting down. When medication did not help I kept returning to the doctors saying my symptoms were worsening, they would send me away saying there was nothing physically wrong with me as blood tests showed my thyroid was now fine with medication.

I changed doctors several times and in 2016 one suggested Chronic Fatigue Syndrome/M.E. I had no idea what it was but I guessed from the name! When I read the symptoms on the pamphlet it was a light bulb moment. “Great, they’ll diagnose me and I’ll pop a few pills and I’ll be cured!”

Nope. No known cause means no known cure. So I began counseling to help manage my symptoms and I am doing a course of Graded Exercise Therapy. The idea being I slowly get used to being more active and my symptoms will improve. So far I can’t say it’s working but I’m still hoping something will change. (*Sally* Cat is aware of the current controversy surrounding GET but is giving it a try. She will stop if she feels it has a detrimental affect on her symptoms).

I have had mixed reactions from people when I tell them I have M.E; some are aware of it and understand when I frequently cancel plans or leave places early with pain or fatigue. Some don’t know what it is, do a bit of research and then are ok about it. But sadly some are unaware that it is a ‘real’ illness and appear to disbelieve me, which is really upsetting. I know its hard not to judge a person on their outside looks but it is hurtful when people say things like “well, you look fine to me” or “Ooh, I’d love to not have to work”. I have been called lazy a few times and told I’m not trying hard enough but I have learned to ignore those people and spend my time with the good ones!

My husband, my family, and my friends are fantastic. Whether its helping me climb the stairs each night, coming over and cutting the lawn, washing up, giving me a shoulder to cry on or just sitting together in calm quiet so there is someone to help if I need something and can’t do it myself.

I have been off work now for 9 months because of M.E and am just beginning to go back, doing a few short shifts each week but it is difficult as it has exacerbated my symptoms again. My most common ones being exhaustion, pain, migraine, sensory sensitivity and inability to concentrate. (So I’m glad I could write this without it turning to gobbledegook!)

I am still in touch with the other participants of the counseling group I attended and we talk about things that help us, we vent our frustrations and we support each other when things can get a bit rough. I think the most important thing for any long-term condition is support and I am so glad I have my close circle of family and friends. Without them I’d be worse off for sure.

Cat xx

The post Read Cat’s M.E. story first appeared on ME Foggy Dog.

I’ve had a lot of my symptoms for a few years, but they really started to show in 2015.

M.E is a variable illness. Sometimes I can be absolutely fine and other times I feel so rubbish that being in bed for hours seems like the best option for me. Having said that, my ‘good days’ now are still not how I used to be, but getting there I think.  I am lucky enough to have a mum who runs her own business. I now work for her and am able to tailor my hours to suit my health and how well I am feeling.

A few months back, I was desperate to just be completely cured. Whereas now, I try to just deal with my symptoms on a day-to-day basis.  Having spoken to other members  on a  course I took ,that taught us how to deal with the illness and how to ‘pace’ , I know that not everyone has the same symptoms.

My most severe symptoms include: muscle aches/burning, jumbling my words, feeling like I can’t connect fully with what is happening around me , memory problems and nausea/dizziness. Luckily I don’t get all of these symptoms ALL of the time, unless I am really wiped out!

I think support is key to handling M.E. I have been lucky to have the support from my family , partner and friends, but have found that I have to ‘prove’ to medical professionals that I am unwell. I have also had to go through various processes just to prove I cannot work full time and am entitled to some financial support. I am still in the process of ‘proving’ I am unwell, but do just about get by on my 10-15 hours paid work a week.

I sometimes use a crutch to walk if I am having a bad day and am out in public. This helps others to be aware that I am a little unstable on my feet, and they then don’t get angry at me for walking slowly!

It took a lot of courage for me to start using the crutch because many can’t see why I need to use it if I am ”just feeling tired”. I don’t tend to use it much, but do find that a visual sign of someone being unwell really helps people to be more understanding.
If I am doing well for a few weeks I do actually tend to think “maybe I’m not unwell after all and was just being dramatic/making it up in my head” but it quite often comes back and hits me in the face when I do too much and need to recover!

My aims for the future are:

• To be more confident in myself, and not be embarrassed or ashamed of being unwell and telling others about it.
• To increase my work hours gradually so that I am able to support myself in the future, and so that I am able to do the social and active things that I enjoy.
• To keep a diary (which I keep meaning to start!) of my M.E experiences.
• To listen to my body and to learn when it needs to rest, even if I feel like i can carry on and use up that last bit of energy.

Love,

Rhia x

The post Rhia’s M.E. Story first appeared on ME Foggy Dog.

Being diagnosed with an invisible illness has to be one of the weirdest things that has happened to me and I’ve experienced some weird stuff!

You have all of these symptoms and you feel the pain but all of the tests come back saying you’re fine! The doctors send you home and you move no further forward. After 5 months of going to the GP in tears on a weekly basis, I was eventually referred to the Tropical and Infectious Disease ward at the local hospital. Sat there silently playing a game of “what does this person have?” in my head…I mean who wouldn’t be wondering…. It’s the Tropical and Infectious Disease ward! Then I realised someone will be doing the same to me. You get sent there when the GP has no idea what’s wrong with you. They take about 8 vials of blood and test you for HIV, Hepatitis etc… I mean, I suppose it’s good to know I don’t have any of those things. My poor arm was black and blue from the prodding about trying to find a vein.

Everyone around you becomes a doctor. Telling you to “think positive and ignore the pain” (REALLY!!!) and their sympathy runs out pretty quick! So, I try to avoid being off sick. Sometimes it’s unavoidable. Like when you try to stand up out of bed and drop faster than a brick from a roof, but other times my good friend Tramadol helps me through the day! It’s great stuff for taking the edge off the pain and it took a lot of begging my GP to prescribe it so this stuff is like gold dust!  Tramadol sometimes makes being at work entertaining! I am able to function, although when I first started taking it my memory was shocking. I asked one of my colleagues what time she came into work as I hadn’t seen her all day, only to be met with a puzzled face and her telling me I had spoken to her an hour earlier! Oops!

Brain fog….nothing seems to work for this little gem. I recently bought a new car…It’s pink so you’d think I would remember this, but no, I was stood in the car park confused and panicking that someone had stole my car….Nope, I had forgotten that I had a new car! I swear people turn my memory issues against me when they forget to tell me  something. I’m looking in your direction Mum! My tolerance to alcohol is non existent now. I was blaming getting older but its a symptom and no lie, I was relieved to find out this wasn’t because I just turned 30!

It’s not all bad though…Even if I am in bed by 9pm every night. I really do believe that if everyone who is struggling with invisible illnesses keep talking, sharing and making people see it’s not our imagination, Maybe something can be done to help us. My illness was brought on by Tonsillitis a year ago.If anyone around me has any sort of Strep infection I literally run away from them. I hope that this can be cured or at least begin getting some sympathy for those of us who are suffering. I doubt anyone truly gets how hard it is to smile daily and power though the pain. No one wants to be sick. I don’t want daily pats on the head or anything, but a little bit of understanding will go a long way.

If anyone reading this is newly diagnosed like myself…Keep going! It takes a while to learn your limits, I often ignore my body and regret it for about 3 days after! We are stronger than we think.

Lynne xx

The post Lynne’s M.E story first appeared on ME Foggy Dog.

Before M.E I had a challenging career I loved, socialised regularly with family & friends, rode my pushbike & rambled miles for fun, played a very hands-on role with my grandchildren, rarely sat down to watch t.v preferring to garden, clean the car or do housework. I rarely slowed down!

Almost three years ago it seemed like my whole world stopped. I developed a severe viral illness leaving me bedbound, several weeks later my GP diagnosed Post Viral Fatigue Syndrome.  Being bedbound, unable to eat or toilet myself, my husband took care of me and the household while trying to work full-time. While I slept the days and nights away for months on end, he battled with his emotions, not knowing what was best to do for me and not knowing if I would ever get better.  Life had turned on its head for him, our family and close friends.

Six months later I returned to work on a phased return. Within six weeks I had relapsed badly & was bedbound again, fully dependent on others to support me, history was repeating itself. Weeks later and after no progress, my GP referred me to a Chronic Fatigue Clinic. Three months later, blood tests, examinations, x-rays and Q & A’s began at the clinic before they confirmed I had Post Viral Fatigue Sydrome/Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (different names for the same illness).  I was referred for Graded Exercise Therapy and put on their waiting list for Cognitive Behavioural Therapy (ME Association standpoint on G.E.T and C.B.T). During this time I had lost my job, friendships & everything I loved about my life before M.E.

After 9 months of no progress with G.E.T, the antidepressants I had been put on seemed to stop working leaving me in a self-destructive hell.  I became angry with my lack of progress and the illness that had robbed me of my career, friends, independence and spontaneity, my freedom to enjoy
life with everyone and everything around me.  I also felt immense guilt for the pressures my M.E symptoms put on my loved ones, especially my husband and children.

Some friendships faded, leaving me feeling worthless in their eyes as well as my own.  A lot of the healthcare profession don’t understand M.E so what right did I have to expect friends to understand it and support me?  There were weeks when I withdrew from everyone, angry that I was feeling sorry for myself with an illness I couldn’t control.  I had every M.E. symptom (and others) listed, I’d tried to stick to ‘Pacing’, get through ‘G.E.T’, tried alternative oral treatments, stuck to regular bedtimes/get-ups but found they didn’t work for me. Not being able to achieve these things just intensified my depression, anger & guilt.

I stand by the saying…. it doesn’t matter what prescription you take to give you a better quality of life, it’s the quality of that life that counts. I have tried various antidepressant medications whilst having M.E. and thankfully the past month or so has been most……… restful.  Being able to let go of the negative feelings that had taken hold has meant that I’ve begun to understand my M.E. body & mind. I rest and sleep when I need to and use medication for my fluctuating symptoms. I have shared the depth of my depression with a couple of my strongest friends, whose support is gentle and encouraging, helping me to become more peaceful and accepting of my M.E symptoms and my changed circumstances.  M.E is a long, bumpy road; sharing it with them has relieved both some of the pressure from my husband and the guilt I had from putting so much on his strong shoulders. M.E may have forced my world to slow down, changed it without giving me any choice but I know I feel better when I don’t fight it, easier to role with it, enjoy and appreciate the simpler things open to me and take one day at a time.

Here are a few things that were helpful to me and mine:
The Spoon Theory by Christine Miserandino www.butyoudontlooksick.com
Chronic Fatigue Syndrome/ME Support for Family & Friends by Elizabeth Turp  &  M.E Association.
I use loaned (Occupational Therapy) and privately purchased equipment to help me manage day to day.

Ryn xx

The post M.E. and Me – Ryn’s Guest Blog first appeared on ME Foggy Dog.

My name is Christina and I am a 26-year-old from the North East of England. I am also a M.E sufferer.

However, my illness had many layers. On the surface, I had M.E and clearly needed a long period of rest if I was ever to recover. However, there were issues deeper down that I have never spoken about until recently. I had suffered from an eating disorder since around the age of 16 and from this age had lived on a strict calorie controlled diet of 1,200 calories a day in addition to taking fat loss pills and often binging on prescription strength laxatives. My body was already exhausted and I was making it worse by not giving it the fuel it needed.

From being diagnosed and admitting these problems to my M.E consultant, life started to pick me. I finally knew what was wrong with me and I started to learn about my symptoms and more importantly how I could control them. There was one thing standing in my way: my job. So in August 2015, I made the huge decision to leave teaching. It was hard for me, but I realised that my health had to be more important than my job and I was living to work. I had just got married to the love of my life and I wanted to build a life with him and not have him on the side while trying to struggle with my job being the priority. I found a job which was still in education but removed the home workload and slowly I started to see an improvement. I had to give myself a good talking to and realise that just because I had to change careers didn’t mean I had failed at teaching.

The next stage was the food thing. Again, I sat myself down and thought “when I die, will people really remember me for how much I weighed?”. The answer is no. People will remember you for being a nice person, helping others, your achievements but certainly not what your body fat percentage is or the fact that you ate that cake last Tuesday. I started to eat properly and this also helped my symptoms as I had more fuel.

Although I like my new job, it is 30 miles away and I am now finding that I am struggling with the travel. But again, that’s ok. I have a job, I have supportive colleagues and managers and am also regularly submitting job applications closer to home. I know that if I’m patient, like I had to be with my illness, in time I will find something ideal for me.

I find with ME, you need to take the Rocky Balboa approach: one step, one punch, one round. Take your time, don’t let the relapses get you down, and most importantly never give up.

Love,
Chrissy xxx

The post Guest blog: Christina first appeared on ME Foggy Dog.

Foggy Followers who have been following since the start of the campaign may remember Kristina from an insomnia lead You Tube clip! (click the link) https://youtu.be/1zbxGeDfXwc. Here is her blog.

Kristina

My journey with chronic illness started with a minor ankle sprain in 2008, which was diagnosed as Complex Regional Pain Syndrome. This turned into a rabbit hole I never could have imagined (definitely not as fun as what Alice in Wonderland experienced). After spending two years trying to get my ankle “fixed”, I ended up having to take time off work, but managed to be back full-time by June 2010. However, it wasn’t easy. In fact, it was getting harder and harder to push myself. I think I had a bad flu in October, but I can’t remember. That’s another feature of ME-CFS – short-term memory loss. But, whether I got sick or not, I do remember my energy steadily declining. I began falling asleep in the supply room during my breaks. I, of course, continued tackling this in my typical “Type A” fashion (if you don’t know what I mean by “type A”, then you aren’t one). Basically, I kept trying to push myself harder to get through the day. Then, one fateful night in January 2011, the right side of my face exploded with pain. That was my initiation into the world of ME-CFS. It was also the last time I went to work. To say ME-CFS makes you “tired” is incredibly offensive. It is so much more than that; though I do have a rather severe case of it. I can remember one day when I felt too exhausted to exist. Just breathing became a monumental task. My body had been pushed for 2-1/2 years, and it was done. Here we are in 2015 and I’m still learning to manage my symptoms; though thankfully I’m no longer afraid of them. Flare-ups come and go in cycles. I’m learning to rest when my body says to rest. So, where is the bright light in all this? I thought you would never ask!

I began reaching out to online communities early on. I have met the most amazing people – many have become good friends, even though we have never met. I have also seen how much my husband loves me. This is hard on any relationship. In fact, I think it’s worse for him in many ways. I don’t have the energy to do much. Oddly enough, this causes my days to fly by (I’m still trying to figure that one out). But he is strong and healthy. All our plans and activities are out of the picture – for now. Instead, he has become my caregiver, and he does it all without complaint – wow! I have also discovered how much God loves me. I know that sounds absurd, but stay with me. Until all this happened, I could take care of myself, thank you very much. However, when my body fell spectacularly apart, I cried out to Him in desperation – and He met me where I was. My husband and I now enjoy a rich faith and we love exploring it together. Yes, my days are still hard at times, but now I have hope! My husband and I are studying the field of Apologetics and I’m enrolled in a Certificate in Theology program starting this Fall. Given my severe cognitive issues, my success relies fully on God, and my commitment to follow through… especially since I just told all of you! So please don’t give up hope. You will make it!

Kristina x

The post Greetings from British Columbia!! Blog from Kristina, a severe sufferer first appeared on ME Foggy Dog.