Question & Answer post

I recently asked on social media if anyone wanted to ask me anything relating to my illness.  Thank you to those of you who asked questions & thank you also to everyone reading this. Here goes.....

What is M.E?

M.E is a very debilitating physical condition that causes various symptoms including severe fatigue, muscle pain & weakness, heightened sensitivity to senses (mine is smell!), problems with memory & concentration & sleep problems. They are just a few of a long list of symptoms & not all sufferers experience the same ones. There is a large scale of severity with M.E. Some people are mildy affected & can still function normally to some extent whereas others are very severely affected & completely bedbound requiring help with everything. I am fairly severely affected, which people who don't know me may be surprised at as I appear to look ok. That is the problem with invisible illness, sufferers often don't look unwell.

There are a lot of misconceptions towards what M.E is due to the lack of understanding towards it I think.  It used to be known as Yuppie Flu & people often think it's "that thing where you're tired all the time".  It is so much more than just being tired. I did a post previously about what M.E is which explains in more detail - link here

What's going on in your body to cause the symptoms?

I am not really sure what's going on in my body anymore!! What I do know is that I constantly feel rubbish. An easy way to describe how I am is to compare my body to an almost empty battery.  I am constantly running on very low energy & if I don't try to recharge a tiny bit by having short rests I burn out.  The exhaustion I experience is totally out of proportion to whatever activity is undertaken.

When you have M.E your body doesn't play ball & I feel like mine has totally let me down.  If I try to walk more than I am able for example, I end up with severe pain & fatigue which comes on very quickly. It's like my body is saying OI STOP!

Our immune systems don't work very well either so we are prone to picking bugs & things up more easily which then take longer to go away & totally wipe us out.

Had I heard of the illness before I was diagnosed & what was my perception of it?

No, the first time I heard of it was when my GP said he thought that's what it was.  He didn't explain it, he may have given me a leaflet but it is pretty much a blur.  I had been forwards & backwards to the doctors over several months so I was finally given a reason for feeling so poorly but I didn't understand it at all.

My mum printed some stuff off the internet for me & I was basically left to find out what it was for myself.  I discovered by the stuff online that there was an M.E clinic local to me so I asked for a referral! And it was there I received formal diagnosis in March 2003.

How has having the illness changed me other than symptoms (i.e am I more patient now, do I appreciate small things more)?

Its has changed me in lots of ways I think. At first I used to get very angry at stuff & it took me a long long time to accept that this was me now.  Over time I have learnt to adjust & although there isn't a lot of positive stuff that comes with chronic illness, it makes you look at things differently.  You definitely appreciate the small things more & I don't take stuff for granted now like I used to. When all the every day things you did without thinking about before get taken away from you, it changes your whole outlook.  Who would ever think that walking down their street would be something they couldn't do? Certainly not me.

When you become ill your world becomes a lot smaller so the little things that other people probably don't find important become really major to us.  I really appreciate people & the ones who take time to think of me. Small gestures mean so much. Knowing people care means the world. I have also met some amazing people through being poorly who I class as some of my closest friends.. other sufferers understand how it is & despite being poorly they are some of the kindest, most generous people I have known.

What's the best piece of advice for someone newly diagnosed? 

Listen to your body.  I didn't & I very stupidly pushed myself to keep going.  I was a 20-something "normal" girl with a good job & a good social life.  I didn't want it to affect my job or it stop me from doing the things I enjoyed. I used to come in from work as a lawyer, sleep a few hours then make myself go to the gym. I remember how I used to tell myself to stop being so pathetic & wonder why I was yawning so much on the cross trainer! I learnt the hard way though & after not even a year I ended up pretty much collapsing & my body totally crashed. It had given up & I regret pushing myself so much now.

What can friends & family do? What should they not do?

It is very difficult for people close to you as they see the person they care about suffering & can't do anything to take it away.  The most important thing to do is just be there whenever needed.  Whether it is to be a shoulder to cry on (as there is a lot of crying!), whether it is to just listen when we need to get stuff off our chests (there is sometimes a lot of shouting!), whether it is to try to make us see things in a different way as our thoughts can spiral rapidly when we are in a crash..we sometimes need someone to be our sensible head.  Helping to get food or drink if we are unable to & other little things to save our energy. Sometimes just a hug will do when you don't know what to say.

When someone is having a particularly bad time, things like a card to let them know you are thinking of them is lovely. Or chocolate always goes down well!  We really don't enjoy feeling so poorly so even getting a nice text message can make all the difference.

Things not to do is say stuff like "snap out of it" or "just stop being so lazy" or "I'm sick of hearing about you feeling poorly" or "I'm sick of you being poorly"!! Having your illness thrown at you isn't nice.

Another thing we (I) don't like but people always think they are helping is to say that their neighbour's auntie's friend's sister had M.E & is now better (as a result of some so called miracle cure)! There are no proven medical cures so as nice as it is we unfortunately have heard it all before & if we don't say much in response then that's why!

What do you do to prevent other illnesses from affecting you because of M.E, such as depression?

I think it is very difficult to become (chronically) physically ill & it not affect you mentally.  When I first got diagnosed & kept pushing myself I was in denial I think. When I eventually crashed I became housebound (& pretty much bedbound) for a year.  My doctor had been telling me for a while that I was showing signs of depression but the whole stigma attached to mental illness & anti-depressants made me fight against it & I was adamant I was fine. I wasn't fine though & eventually broke down in front of my GP.  I started on tablets despite my worry about them but I soon felt like me again & wondered why I had been so against it.  I came off them after a year or so when I started getting my head around being poorly & having to change the way I lived.

However once my daughter was born & my condition took a turn for the worse I didn't realise I was suffering again. I was diagnosed with post natal depression & started back on tablets but I think it is virtually impossible to avoid it when your life is so severely affected by illness. Depression isn't just feeling "depressed" & it may not even make you feel like that. It can affect you in so many ways for example making you really short tempered, disturbing your sleep so you wake up in the middle of the night but can't get back to sleep, giving you major loss of appetite.  All the symptoms were there but I didn't realise until months later when I spoke to my doctor about something else & happened to mention it.

People tell me now I am always happy & radiate positive energy.. not sure I agree & they don't see me miserable & moaning ;-) But I do try to stay positive & I think I use humour a lot to cover up the crap.  I find I laugh a lot now, it helps having equally crazy friends!! There's nothing much else that makes you feel the way proper belly laughing does!

What medications do you take for pain & sleep?

There are various meds we can take to try to help alleviate pain but there is nothing we can take to cure M.E unfortunately.  My pain has been a lot worse over the last few years & I may also have another condition called fibromyalgia which a lot people with M.E seem to get too. Something I use a lot is an electric heat pad. It is really good for aches & I have it on a lot!  I have regular osteopathy sessions too which helps with alleviating the pain for a while.

I take muscle relaxants at night as & when I need them, usually when I am feeling particularly achey as they help with the pain the next day.  I have a few different painkillers for when my pain is bad. I am prescribed a high strength of co-codamol which used to make me feel woozy but I am too used to it now so it doesn't affect me much!  I also have sleeping pills as my sleep is so bad.  I never had sleep problems until I started with M.E.  Insomnia is evil!

How do you explain M.E in a child friendly way?

For my daughter me being poorly is all she's ever known.  She is 5 & a half now & understands that "mummy has M.E & doesn't have much energy".  She knows I get really tired & my legs hurt so I need to use a wheelchair.  It's how things are for us & she just gets it.

Some people with children try to hide their condition from them, or the severity of it, but for me that was never an option.  I think if you explain when they are old enough to understand, even in basic terms, that you are poorly & can't do X Y or Z it gives them a better understanding of why you might not be able to do the same sort of things they see other mummys or daddys do.  I don't think complicated explanations are needed but if they grasp some sort of understanding then it is a good thing.

How was it when your daughter was a baby? How did you cope then?

It was very tough. I didn't expect to become so much more poorly so quickly as I had been at the same sort of manageable level for a while. I relapsed very quickly after having her & was unable to get through a day without having to ring my husband to come home from work early, which wasn't exactly ideal. I used to try to manage but by about 4pm the fatigue was too much to cope with & I would feel like I was going to collapse. It wasn't just the usual tiredness everyone with a baby gets. It is so difficult to explain but I needed my baby to be safe & I didn't feel with the way I was that she would be.

After a while my husband had to get signed off work to help look after us both & we then got support from the doctors in getting care put in place to support me.  Carers started when my daughter was 6 months old & having someone there to help with stuff I didn't have the energy for made all the difference. Knowing I could go & lie down to recharge a bit while my baby was safe helped loads.  Family helped whenever possible too.  I felt useless but soon came to realise that I was just doing the best I could as a mummy with M.E.

How do I manage mummying & being ill?

It is a lot easier now in respect of her being old enough to play without having to constantly be with her.  She has always been very independent since being tiny anyway! We have to do things differently to other mums & as I have mentioned recently in another post we do a lot of craft stuff or play games at home as I am not upto going out lots.  She knows I have to rest a fair bit & will happily chill out with me & watch something on tv while I shut my eyes.

On weekends if we don't have anything planned (or if she doesn't have a play date or a party!) her dad will take her out so she can burn off some energy which she has loads of! Or family if they are around when he is working.  She is quite happy being in the house but I don't like her to be stuck in because of me so if someone can take her out even if just for a bit then it helps. The rest of the time she is happy playing with toys or sitting drawing or colouring in & I'm sure my non existent artistic skills have improved loads as a result!!  I experience a fair bit of mummy guilt about not being able to do certain stuff but try not to beat myself up about it too much.

What does my future hold in terms of ever feeling better?

Honestly I don't know. Chances are because I've had it so long even if I was to improve it will always be there.  It is difficult thinking about the future when trying to manage the here & now. Some days just the thought of getting through the day when plagued by horrible symptoms is daunting enough.

I would love to say one day I will be free from this horrible illness & able to work, or live what I perceive as a normal life, but I just dont know.


Thank you so much for reading & if anyone has any other questions feel free to ask.

ME Mummy A xx


Having a break from the norm

I am not upto writing too much today as we have been away for a few days & I am suffering big time! The joys of payback...

We went the seaside overnight to a place called St Annes which is next to Blackpool. It was nice having a change of scenery & a bit of fun.  I knew I would feel rubbish as a result but (& I have been speaking to a few friends who also have M.E & we all agree) it is worth feeling rubbish when you've actually done something rather than feeling rubbish for no particular reason.  You expect payback & you know it will wipe you out but as I've said before if we don't ever do anything then it makes an already crap existence even more crap!

The journey wasn't too bad despite taking about an hour & 40 minutes.  My back hurts when sitting for not very long & I get really uncomfortable.  But I managed to shut my eyes as my daughter was happy with her electronic books & games on the tablet (obviously I wasn't driving!!) & I was almost nodding off.

We went down to the Pier when we got there & went in the arcades.  You can't go to the seaside & not go to the amusements! Dread to think how much money we wasted!!

We had good old fish & chips too which again is a must at the seaside!

We went back to the hotel & while I rested they went swimming.  We then chilled for a bit before going to do some children's activities.   My daughter now has an arm full of Halloween tattoos!

We had dinner in the hotel & made the most of the buffet! I don't really eat dessert at home but couldn't resist the huge chocolate cream eclair Mmmmm...such a piggy.

We went to Blackpool zoo the following day & really enjoyed it. I was complimented on my newly decorated wheelchair (blog post to follow!)  It was very wheelchair accessible & made it easy for me to get around.

The first animals we saw were a pair of giant tortoises who happened to be mating. My daughter thought it was cute that the mummy was giving the baby a cuddle!!!

They have loads of wild animals there from tigers to elephants to giraffes & it was really nice being able to get so close to them.

My favourites were the penguins but their feeding time was rudely interrupted when a seagull went to the toilet on my daughter's head & we had to go & wash it out!!

We watched a creepy crawly talk & those who know me will be shocked to find out I held both a giant snail & a giant cockroach. I bottled the cockroach at first then decided to give it a go.  I can't say I enjoyed it!  My daughter wasn't phased at all...

We stopped to see an old friend briefly on the way back who I worked with many moons ago & haven't seen for a long time so that was lovely.

Journey home was a nightmare & there must have been an accident or something as we hardly moved for ages so ended up diverting to my uncle's house in Manchester & stayed there for the evening!

I am having a couple of total rest days now so will hopefully pick up soon. After over 11 years of experiencing payback you would think it would get easier but it doesn't.

However when I think back to the "cuddling" tortoises it makes me giggle & seeing my daughter have fun makes it all worth it :-)



Craft ideas for children

The weather has turned now & Autumn is well & truly upon us, which means less playing out for kids & more spending time indoors.  As I am not up to going out lots with my little Miss we often do crafty things in the house anyway.  Which I have to admit I enjoy as much as she does!

I am going to list some of the stuff she/we have done & that has kept her occupied for ages.

Most recently we picked a load of conkers (which the majority of were used to put on windowsills as a spider deterrent!!).  The ones that were left I said she could decorate, which meant getting glue & glitter out, my favourite thing!  She had found one lonely pine cone too so she also blinged that up :)

Autumn is also good for collecting all the different coloured leaves & we usually do some sort of artwork with them! After jumping (her not me!) in them she collects them in a bag & chooses the prettiest to make pictures with. They don't last long as the leaves dry & crumble but it's nice doing.

Something she really enjoys is baking.  I love it too but I struggle with more complicated recipes as it wipes me out too much. So providing we measure everything out first she will happily mix it all together & if I tell her what needs doing she loves doing it. We make a mean sponge cake (thanks to trusty Be-ro & their recipes) & make them pink as often as possible..not forgetting decorating them with lots of sweets!

Another thing she likes doing is making (sugar free) jelly & we use silicone moulds so it makes it a bit more fun. Strawberries work well in it if you want to add something but kiwis don't as I found out when I tried it!

Paint is always good fun for kids & I saw something online which I thought was lovely..putting their handprints onto clothes.  She jazzed up a couple of her things & did a vest of mine. I kept it as I am sentimental like that! I love having stuff she has made & actually have a box for such things :)

Another thing she did very recently was painting a self portrait onto a blank canvas. She has really got into drawing in the last year & has a real eye for detail.  She will happily sit drawing pictures for ages now & I have started putting them in a folder as they are so good! The canvas she did is up on her bedroom wall & it's such a simple thing for them to do too. We also have one that she did with my niece when they were tiny & it looks more like a crime scene but art is art! :)

Being a parent with M.E or any chronic illness is very difficult but there are lots of fun, low energy things we can do with them at home.  I mentioned in a post a while back about the guilt I experience about not being able to take her to lots of fun places etc.  But when we were talking about me not being able to do certain things she told me her favourite is doing craft stuff with me so I must be doing something right.

How we perceive things isn't always the way they do.  So we need to try & be proud & should be giving ourselves big pats on the back for what we do manage to achieve.

And my love of glitter & all things sparkle has rubbed off on my daughter so I am very proud ;-)


A day in the life of ME!

Imagine a full battery. Now imagine a battery that's almost empty. *That's me*! And that teeny tiny bit of energy is supposed to get me through a day.

In my previous blog about spoons here
I talked about how they are like units of energy & each activity, no matter how small, uses up a certain amount of units (spoons). Once they are gone they are gone & you are literally running on empty.  Too drained to keep going. Out of power so to speak.

A typical day for me starts after probably having a rubbish sleep the night before. Even if I have slept ok I feel horrendous when I wake up.  Like the worst hangover ever.  I may as well have been out partying all night as that's how it feels.  The unrefreshing sleep is a major symptom of M.E. And that's on a good day! Some mornings it feels like a train has hit me in the night & everything hurts so badly.

I always take some sort of snack upstairs with me at bedtime so when I wake up I can quickly eat something & try to top up the little energy I have.  Depending on whether I am up with my daughter or not depends on what time I wake up.  If it's my turn then it is sometime around 7am which when you've not slept great is a bit of a nightmare sometimes! I drag myself out of bed & walk round like a zombie. If I catch a glimpse of myself in the mirror I scare myself quite often.  Or laugh at what I look like!

If I am up with my daughter for school she usually has me hysterically laughing within minutes with whatever crazy thing she does. Great mood lifter having a child (sometimes!) She practically bounces out of bed & has so much energy!  She gets dressed & we go downstairs to get breakfast. Me usually still in a zombie state!!

My carers come around 8am & take her to school for me now if it's my days to do it. Which means I can chill & stay in my pj's then go back to bed haha! Usually within an hour & half or so I am flagging & need to rest.  If I don't stop & rest & push myself to keep going it means I won't pick up enough to get through the rest of the day as I go into negative energy.

On those days I get a decent amount of time to properly rest & if I can snooze it helps pick me up a little bit.  I have to try to make sure I eat regularly & snack on stuff otherwise I go light headed (see previous post on food). I usually ask carers to make something like a salad for me & leave it in the fridge so I can quickly grab it for lunch when I am hungry.  I tend to spend those days resting & will watch some stuff or do a bit of jewellery making if I feel upto it. I go online & can talk to or have daft conversations with my online friends on social media. Or I browse glittery things online & wish I had loads of money to buy it all! I tend not to see friends on the days I have my daughter as I know I will need energy for later on.

Then at school pick up time I will either go to collect her or a carer will do it for me. School are good & allow me to park in the carpark but it takes so long as I have to get there earlier & leave after everyone else so I find it really draining.  It's a lot easier if I just wait at home & then am likely to be able to actually spend some quality time with my daughter when she gets in instead of needing to rest straight away.

She knows I have to have rests & is quite happy drawing or playing or watching something while a carer stays with her, so I can go & lie down for a bit.  I just need to keep topping up that almost empty battery as much as possible to avoid it completely draining & me crashing. Which happened a few days ago & was very scary but will talk about that another time.

Tea & bathtime soon comes along & we always end the night with stories in bed before she goes to sleep.

Weekends I find difficult as trying to occupy her for a full day is tough so if I can get someone to help out it gives me a break & allows me to rest.

The days where my husband isn't working are pretty much similar apart from me not having to get up as early! I might arrange to see friends or go shopping but all depends on how I feel that particular day.  I hate having to cancel on people but they understand.  If I do go out, even if just for a coffee & a catch up, it wipes me out.  But I always think that if we didn't do stuff then an already difficult life would be even more boring! It is sometimes worth the Payback for doing something you enjoy even though you know you will suffer for it.

People might think how good it must be to not have to get up & go to work.  But it's not. It's rubbish & it's very hard to stay level headed & not get too down about it.  Some days I cry & scream & swear just to get it out of my system.  Which of course wipes me out even more! Not one person I know who has to live this life would choose it over being what I call "normal". What even is normal anyway? Being normal is boring I say!!

I am going to be doing a question & answer blog post soon so if anyone wants to ask anything relating to the M.E or my condition please leave a comment below or send me a message (those who know me!)

Thanks :)

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