Guest post, from a daddy with M.E

This is a friend of mine who has ME's story. I really appreciate him taking the time to do this, it breaks my heart & shows the reality of life with ME.

Ali asked me to write about the experience of fatherhood with ME a while ago, but having no short term memory whatsoever I totally forgot. But with a polite nudge I'm back in the game so here we go.

I guess if I had to put a title to my experiences it would probably be "How not to approach being a daddy with ME". My preparation for the birth of my first daughter involved slogging on 3/4 days a week at work even though I knew it was making me more ill, because I thought the money would be important, and completely ignoring my body until the day she was born. Which was pretty stupid from someone who had spent seven years in my early to mid twenties largely bedridden, making a slow recovery to something approaching 70% of my former self, telling myself that I'd never abuse or stop listening to my body again.

But after meeting and living with my ex partner for three years I started to feel the pressure of not contributing and watched all of my friends become very successful and wealthy in a career that I had lost. And so I decided to f*ck it, stop letting my body rule my life, get a job and start exercising again. I struggled with a few fairly menial jobs then got offered the opportunity of a lifetime (the lifetime of an ill person) and a road in to a professional career, part time at the age of 31. And I knew I shouldn't do it. I knew it would be too much. And I said yes anyway. And as ill as I felt, it was wonderful to put a suit on again in the morning and go off to a normal job the same as everyone else.

After nine months at work my partner fell pregnant. Initially it was the plan that I'd work until my girlfriend's maternity leave ended but by the time she was due I was utterly defeated. So I handed in my notice and left my job two days before Evie was born by elective Caesarian (She was breach). The day of the delivery we arrived at hospital at 7am and waited, and waited, and waited. I paced and shuffled and shuffled and paced until 5.30, when we were eventually taken down to theatre. I was beyond exhausted and in pain and spent most of the birth sat on a chair by my partner's head with my own head next to hers on the operation table. Eventually my daughter appeared, was hoisted in the air, pointed at me, weighed and cleaned down  and then plonked in my arms in a blanket. She was less than 8lbs and I could hardly lift her. It'll remain the most surreal moment of my life. The greatest and the most terrifying. I was taken to the recovery room and just left with her. I had no idea what to do, no energy left to do anything anyway. I just slumped in a chair and looked at her, held her hand and waited for her mum to appear. The rest of the day is a blur, but I was left to go home by myself, collapse in to bed and get the last two nights sleep I'd get in years.

I collected them both from hospital and brought them back to our flat and what followed was the happiest, most symptom free three months of my life. Evie slept a lot, I slept a lot, we did everything together, shared the workload once my girlfriend had recovered from the operation. Even during recovery my daughter really just wanted to be cuddled and breast fed. We had three months as a family, worked out that Gina Ford is full of sh*t, made it up as we went along and had a magical time together. Then my partner went back to work and left me to it and all was fine. We did lots of cuddling and sleeping and walks and it was wonderful, but then as Evie began to be more awake and alert and more demanding things began to get more difficult. Less and less chance for breaks, rests and sleeps, more activity. It was slow burn really. Just a slow increase in pain, neuro symptoms and tiredness. Bearable, possible to ignore for quite a long time. A really long time actually. So much so that I kept going to the gym a couple of times a week as well because I'd decided that I was having my life, on my terms. We had no car so had to walk everywhere and I used to have to walk with Evie to get her off to sleep in the day as well. Walk 2 miles to Rhythm Time, Water Babies, the supermarket.

I didn't tell anyone. I couldn't even admit it to myself.   I think it was about 18 months in when I really knew I was in trouble. Evie's mum was working long hours and I could go a week as pretty much sole carer. We had no family around, no friends nearby, it was just me. We were struggling and under pressure. Helen suggested we had another baby. I agreed. I have no idea why. After a few weeks of trying I realised it was folly and told her. She told me she was pregnant. And so followed nine months of waiting, getting iller, knowing I was about to have a baby I wouldn't be able to look after. Charlotte was born on April 14th, again by Caesarian, again with my head on the operating table, this time utterly terrified. Two months in to my girlfriend's maternity leave I finally told her there was no way I could carry on. We went to the doctors, repeatedly, and asked for help. I was given painkillers for the increasingly blinding headaches I was getting, sound and light getting more and more painful. And I was sent to the local CFS/ME clinic where I was taught about pacing that I couldn't possibly do.

Finally my physical health snapped and a year of hiding the truth from myself and everyone else exploded and I had a breakdown. Total mental collapse. Stuck in a body that wouldn't work and was hurting me, too ill to hold my baby daughter or play with my my eldest. I'd just had enough. Wanted out. And so the vicious circle began of the severity of my symptoms and my worsening health fuelling my terror and depression and my terror and depression fuelling my worsening physical health. What followed was just a blur. After three months in my own home, my parents caring for me and my children, I had to leave, my guilt at not being able to be the dad they needed, the fact that just their noise and physicality was making me more ill. My parents brought me back to their house to recover and the kids went to their maternal grandparents.   With help my depression eased, but my ME symptoms didn't and worsened to the point where I was largely bedridden in a dark room, blankets over the windows to keep out the light, ear defenders. I couldn't have my kids near me let alone be a dad to them. Three months I was like that. I wanted to die. The girls came to stay, I would come and see them for short periods, and go then back to my room in tears. My eldest desperately wanted me, missed me, needed me. I was her dad who'd stayed at home and raised her and now I couldn't be in the same room as her. My GP saved my life, tried different drugs to help and finally we stumbled on amitryptilene, which at the right dose and added to tramadol eased my neuro pain so that I could open the curtains and listen to sounds and play a little with them. And so I built from there to what I have today.

Their mum and I separated when Charlotte was 6 months old. I think we both felt relief, her from the stress and worry and me from the guilt about the unhappiness my situation was causing her. Some people are carers and some aren't. I can't judge anyone who isn't. It would be unfair to to make someone do something that causes them such unhappiness. I think she was worried about how it might affect the children and I can understand that. So I was left at my parents, in the room I grew up in. Where I still am.

2 years later I can do a little more on good days: drive, take them to the swings, pick them up from school, have them stay for a few days with huge help from my mum. And Charlotte, so tiny when I had to go, now loves me as much as her big sister does. They miss me terribly and I miss them. This isn't the daddy role I envisaged. I feel inadequate, helpless. Some days I've had enough and want out. But I do my very best every day I'm with them. They ask me not to go home, get upset when I/they leave, but they are more accepting as time passes. I have them every other weekend and for longer in the school holidays. When they're here I keep going until I drop, until I'm totally spent or am in blinding pain. But I never ever let it show. Never talk about ME or my symptoms in front of them. They have an au pair who lives with them and looks after them before and after nursery (my idea) until their mum comes home. It's the best we can both do. I love them with all my heart. Every day away from them is torture. I both yearn for their next visit and fear it, because I know how ill it will make me. I still push myself too hard even where they aren't here, out of boredom, inner drive, frustration, pretence that I can still do things, will to do things. I've started a second degree. It's hard but makes me feel some self worth.
And my ME is getting worse, I think. And I suspect my guilt and drive to be the daddy they need will break my body irreparably (if it already hasn't) in the end and plunge me back in to that dark bedroom. I fear my pain relief stopping working, resulting in the same.

So I would say, if you're a man with ME, who wants to be a daddy or is a daddy, don't be like me. Read this and learn my lessons because something inside won't let me learn them myself. Have family and friends close by. Don't feel guilt for what you can't do. It's not your fault. Ask for help. Be open and honest. I wouldn't change my kids for the world. They make me incredibly happy, but also incredibly sad. I wouldn't take it back despite what I've gone through since. In between the difficult times there were times of joy and being at home bringing up your own child is a blessing. I saw all of her milestones, tended her through every illness. Soaked in every last drop of the experience because I knew it was and is the most important job I'll ever have. But I have a lot of regrets and I wouldn't want anyone else to feel the same. You can be a daddy with ME and a very very good one and I would recommend it to anyone bar the more severely affected. But make sure you understand just how physically demanding it will be and that you have support around you and a partner who totally understands the issues and problems you will face. If you think you want to go ahead and have a baby (and having a child is something many of us would feel unfulfilled without doing) then go for it. It will bring you total happiness and contentment. I would again without hesitation. I'd just do it differently.


  1. Heartfelt stuff, and well done for putting out there. Being a parent with ME is very difficult, as ME takes the persons soul and changes it completely. All the ordinary ways of seeing yourself, as a father or mother, are taken away and it is extraordinarily difficult to see parenthood from the position of somebody who is seriously, and chronically, ill.
    What this blog shows is that children see their parents as just that: parents. It's the parent that heaps more and more pressure on themselves because their outlook has changed, their perceived role has gone and been replaced with something they never thought about before.
    The biggest problem that I see having ME/CFS as a parent is not what support other people give you, it's what support you give yourself.
    And this blog gets that point across very well.

  2. Very true. We do put so much pressure on ourselves & feel like failures when in fact we should be patting ourselves on the back for doing so well. It is such a cruel condition that robs us of so much. Personally for me, my little girl brings me so much happiness & I wish I didn't feel so much guilt towards not being able to do "normal" stuff.

  3. I can't yet find the words... You are both absolute heroes

  4. Well done for writing this post, it's very touching. I can't imagine how hard it must have been for you. It sounds as though you do the best you can and I hope that you won't be too hard on yourself xx


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