Memories

I am writing this while I should be resting after a hectic day.  It has been my daughter's 5th birthday as well as Mother's Day & I am lying here thinking, so thought may as well get it onto paper so to speak.

Five years since she was born. Five years since my life changed forever. In both good & some not so good ways.  Five years since I became a mummy.  A mummy with M.E.

My last post was me talking about needing to accept I needed help in the form of carers.  I will talk about it in more detail on another post as don't want to turn this into a long or detailed one.  But I will say that having carers made such a huge difference in a positive way.  All the little things that I burnt out doing before, or just couldn't even do, I had other people to do them for me.  It meant I could save my very little energy for managing to get through the day looking after my baby. Then my toddler. Then my little grown up girl!

It took a while to get used to & I didn't always have carers I liked or bonded with so had to get others instead, but it made me feel safe again. And in a funny way not quite as useless.  I continue to have care now.

I have been thinking about all my daughter's birthdays since she was born & all the fun stuff we've done to celebrate.  I feel very proud that she is such a lovely caring little girl.  Proud to be her mummy.

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.

Why ME?

I've not written a post for a bit, have had a lot going on & not been able to focus on writing.  Feeling rather emotional today & the fact my baby is turning 5 in just over a week is perhaps contributing to that.

Having a baby & getting to know this tiny person you have created should be one of the most exciting, happy times in someone's life.  Those precious early days, weeks & months should hold nothing but amazing memories.  For me though, as well as some very happy memories, the majority of what I remember was being very poorly. Not coping. Feeling like a failure.

It became apparent after a very short time that I was relapsing.  Although I had never been great, I had been at a certain level since being diagnosed with M.E in March 2003 (another reason I am maybe emotional as it is yet another year to add to the years of being ill. I always struggle around this time of year).  But within weeks it hit me how bad I had become & how quickly I had gone downhill. My husband works shifts but I was unable to get through a day without feeling horrendously wiped out & needing help as I didn't feel I could look after my baby safely.  I was beyond exhausted.  The fact my sleep had become a problem didn't help. Once I had done a night feed I couldn't get back to sleep.  So this was impacting on my M.E symptoms too.  My head felt like cotton wool.  I felt light headed & dizzy.  Totally wrecked.

I was having to ask people for help to come & sit with the baby so I could rest.  Family members used to take her out for me on a weekend if it fell on the shifts when he was working.  I hated the fact I was struggling so much.  Resented everyone else for being able to do the things I wanted to do.

I never imagined I would be so unwell. It became so bad & made everything very stressful.  My husband ended up having to get signed off work with stress as it was affecting him so much.  This wasn't how life was supposed to be.

I wasn't sleeping properly but also had no appetite whatsoever.  I was really irritable & just thought it was due to the situation.   But after eventually discussing with my doctor I was diagnosed with post natal depression.  It was a relief more than anything.   I had been depressed when I first got ill several years before but hadn't recognised it at all.  I was prescribed anti depressants & it wasn't long before I started feeling like "me" again.

The M.E symptoms however were well & truly there.  My doctor said we couldn't carry on like we were & suggested getting some help through adult social care.  As soon as you hear social services mentioned you panic & think your baby will be taken away but that couldn't be further from the truth.  I was assigned a social worker & had unbelievable support from the start.

Fast forward a few months & we had a care package put in place.  To help not only when my husband was at work but also to come & help in the house to take the pressure off.  It is a strange feeling knowing you are a grown woman with a child but you cannot manage without help. Ashamed, embarrassed, that feeling of being a failure again.  But if it meant we could live more of a normal life & I could spend my precious energy enjoying being with my baby then surely it was only a good thing ♡

Everything changes

The first few days after having a baby, for me, all went by in a bit of a blur.  I was an emotional wreck (don't you just love hormones).  One minute I was delirously happy then the next crying my eyes out! But I was totally & utterly in love with my baby. Staring at her seemed to be all I did. Apart from changing nappies, feeding her etc etc!

However I was exhausted. A different type of exhaustion to the fatigue I get with the ME.  Broken sleep is a killer at the best of times & since suffering with the ME I had always had problems sleeping. But this was a non stop, never ending, feeling of permanent bleugh!

As I've already mentioned, bottle feeding was what we decided to do.  We took it in turns to do the night feeds, alternate ones, every 3 or so hours, depending on when she woke up.  At least we were getting a few hours sleep in at a time.  But I then started being unable to get back to sleep after doing the feeds.  Which was a problem!  Plus the fact she was so sleepy halfway through a feed which meant getting milk down her was sometimes really difficult.  And she was a nightmare getting any wind up.  It sometimes took as long to wind her as it had to feed her!

Obviously everyone wanted to come & meet the baby.  I couldn't cope with people coming all the time as wanted to make sure I rested/slept in between feeds or visits whenever possible.  So we did a timetable type thing for visitors.  When people asked when they could come we limited it to one in a morning, one in an afternoon & one in an evening.  Which actually worked really well & other friends who don't suffer from ME have been known to do the same!

I used to love snuggling on the sofa with her lying on me. People always say that the newborn stage doesn't last long & to cherish it & it's so true.  She used to pull the funniest expressions even from being tiny. And was very alert from the start.

My mobility is very bad & I have to use a wheelchair for anything other than a very small amount of walking.  What I did find very difficult (& still do now nearly 5 years on) was not being able to take her for walks.  I walked her round the corner once in her pram & it was about the only time I had done it.  I used to watch people walking up the street pushing their babies in prams or buggies & feel an enormous sense of envy.  Anger even.  And more than anything, upset.  I wanted to do that more than anything.  But couldn't.

My life as a mummy with ME was already proving challenging...

What is M.E?

I didn't realise how many people would take an interest in & read my blog! Not just sufferers who are familiar with the condition, so I thought it would be a good idea to write a bit about what M.E is.

M.E (Myalgic Encephalomyelitis) is a physical, extremely debilitating, illness which is also known as Chronic Fatigue Syndrome (CFS) (CFS/ME). It is a long term - chronic - condition that causes many symptoms.

Sufferers experience persistent severe fatigue and/or pain.  Post-exertional malaise (P.E.M) is commonly experienced.  It is the body's inability to recover after expending even small amounts of energy, also known as "payback".  The fatigue sufferers experience is completely out of proprtion to the activity undertaken.  Doing the most minimal of things causes extreme fatigue & often pain.  It can take several days/weeks to recover & even then we never feel well.

Other symptoms include muscle & joint pain, mobility problems, sleep difficulties, problems with memory & concentration, hypersensitivity to light, smell or sound, cognitive problems also commonly known as "brain fog".  Brain fog is a good one, it makes us forget what we are saying mid sentence & jumble up our words.  It is good when you have an excuse for putting the milk in the cupboard instead of in the fridge though!

There is much debate about the underlying cause & what does or doesn't help but there is currently no treatment medically proven to cure M.E.

There is also a wide spectrum of severity, from mild to moderate, severe to very severe.  I personally am severely affected. Symptoms fluctuate & can change over time.  Even in it's mildest form, M.E can have a significant impact on life.  A lack of understanding & awareness often finds sufferers treated badly & they experience disbelief, even discrimination, from people close to them as well as health professionals & employers.

A good website with lots of information & helfpul advice is www.actionforme.org.uk

If I can try to help raise awareness of the condition, & help people understand a bit more what it is like to have it, then I will be happy.

I will be continuing to blog about what it is like having a child whilst suffering from this horrible condition but thought it was important to talk about it in depth a bit more at this stage.

Any questions feel free to ask.
ME Mummy A :-)