Confessions of a Bed-bound Mum Surviving Without Energy

Confessions of a Bed-bound Mum Surviving Without Energy

What I need to confess

I often get asked how I cope with constant pain and Joel is asked daily how on earth I keep so positive. I even ask myself how I do this whole Mum act whilst being stuck in bed 85% of the time. So I’ve decided it might be time to confess that…

1. I’ve been rejected and accepted for living in bed
2. I’m not always positive and productive because I’m always in bed
3. Stuck in bed with no energy, I honestly don’t cope
4. It’s humorous how some of my ‘stuck in bed’ care is curious
5. I realise my support network helps me survive being stuck in bed

Photo by Paula Lavrador

Just in case you thought I’d gone all Negative Nelly on you here, I haven’t, This post is about surviving!

But there is contemplaining in this post. I’m owning the hidden side of the warrior: the thin skinned; dirt dishing; ranting foot-stomping anti-hero. I’m owning up to my inner 5 year old, throwing her toys out the pram!

I hide my negative side, but if I’m being open about living with chronic illnesses, then I have to admit I’m not always positive and that, my friends, is okay. I need to learn to say to myself that it’s okay not to be okay, too!

Being rejected and accepted 

If you knew me before I became the brain diseased Laura, then please know that I probably don’t mean you as I have a cathartic moment here (unless it is you). Then you have a choice to make – contact me or fly away for good! Harsh I know, but…

When I first fell ill and could drive, make my own lunch and put my kids to bed; most people stuck around. But when I was so ill I couldn’t get out of bed, things changed. Some have shown where their priorities are, so if you’re waiting for me to contact you, then bad news – I won’t be. I’m too stuck in bed, in pain to do that! 

I don’t miss anyone that chose to leave my life, as such, but their selfish actions still play on my mind. What hurts most are the life event friends (marriage, babies etc.), those I thought of as close friends who no longer want to be there for me. It sucks to admit that, but I have to use my energy on my friends that get it.

I love the friends that stuck around when this disease started eating away at the Laura I was (I’m mostly all there now); the friends who’ve never doubted me. I can’t tell you how much I appreciate them accepting me as I am. Thank you to those of you who don’t bat an eyelid when I cancel plans; for sitting on my bed with your legs up, getting your own drink, listening when I ramble on and telling me off for doing anything, like that’s normal. You keep me going on the dark days.

For my full story read this: Learning To Live One Day At A Time – My story so far

*Disclaimer – this will not be as good as The People v OJ Simpson  – True Crime Story

I’m not always positive and productive

I wake each day hoping to do so much, but I just don’t have boundless energy. I do feel like I’m betraying you by even hinting at negativity when I push for positive energy so much. But, let’s be honest, no one can be positive every second of the day; unless they’re ‘Cor Blimey’ Bert or Mary Poppins.

However, life as a bed-bound mum is pretty shocking really. I try not to think about it in the grand scheme of things, so I fill my day with distractions. But despite knowing when enough is enough, I struggle to act on what my body is telling me. I’m in constant pain, whether in bed or seeing friends; so despite being so ill I’ll push on.

Genuinely I often feel uncertain, not knowing how I’m going to feel each day. Sometimes I can’t even guesstimate my pain level on waking, as it can change in minutes. I plan my day ahead but I’ve learnt to adapt plans. However, this is when I can be unproductive and it can result in one of these things happening:

• I force myself through the day, thinking it will pass
• I keep busy but end up not finishing anything in my planner
• I forget about the one thing that does need doing
• I don’t meditate or give my mind some space
• I don’t move much – no bed yoga or even my physiotherapy exercises
• I rest all day and let go or I just get really bored
• My body decides to sleep all day, so I get nothing done

Guilt for no reason is hiding anger at oneself

I find it frustrating and have so much time to think, stuck in bed day after day. I do have a Guilt Goblin that chips away at my self belief. The trail of red mist lingers with a sour taste of culpability. My self anger can last for days, but Joel’s my knight in shining armour who kicks that spurious fiend back to the Goblin Gaol and curbs the self sabotage.

I feel a little dishonest about only just opening up about how dark some of my days are. I’ve not tried to hide it, but my naturally positive outlook means I bury the negativity. I know the only person putting pressure on me is me, so now I need to find balance by permitting myself to let that anger out to break the goblin’s curse.

With no energy, I honestly don’t cope 

I admit that I feel drained and rough around the edges but I have some control so I can cope. I’m scared that If I allow myself to feel negative, there would be a BOGOF deal on. I’d end up with a double negative and they don’t do nobody no good!🙈

The problems which arise for those of us with chronic illness come with fat globs of failure and guilt. It can be overwhelming even though these feelings aren’t validated. I can use up more energy fighting the dark days; instead of saving it for better ones.

So I’ve realised that if I let myself rant, I can save my mind from splintering. My safety net is in the power of words and if I put my energy into going full James Joyce mode, letting my thoughts flow on to the page, I may make some brain space. I admit  it’s exhausting to let buried guilt free but I have to, before it poisons my future self.

To be able to cope with it all alone is too much and it isn’t fair to transfer all the pressure on to Joel. So even though it’s hard to do, accepting help has allowed us all to use our energy wisely. I can focus on being a mum and we can focus on family life.

Confessions of a Bed-bound Mum Surviving Without Energy

Some of my care is pretty curious

Joel and the boys are still my main carers, even though they’re unpaid – shh! They still manage to make me laugh every day, often about my own care needs! Doing that constantly is too much to ask, so I have two Carers that help me on weekdays.

Helen and Sam are both very different characters on top of knowing my needs, we  have a good giggle most days too. They do pretty standard physical care, such as making sure I wash and eat. But they also have to cheer up a lonely, bed bound 41 year old who lives in the dark, the literal dark and sometimes the dark filled mind! 

Helen’s a gentle soul and brings an air of calm with her. She seems to have the ability to make me say and do sillines and I think I make her laugh most days! Sam’s a more recent addition to the team. She gets everything done, despite her clumsy limbs and we giggle our way through most days. She’s also owns being weird and I love that!

I’ve let you in on some of the darker sides of being a bed bound mum, so now I’m up for sharing what goes on beyond the scenes, why all of my Carers need to be on it with me and maybe have a little bit of crazy about them too… in a good way! 😜

• They have to make sure I’m safe, especially using the walker around my room as I get over confident thinking I can do it, but I don’t always see the collapse coming or Sam falling over it herself, when she brings the extra kooky. There’s a need for me to have constant reminders not to bend over to pick up everything I drop. If I had £1 for everything I dropped each day… I’d have to um… give it to everyone that picks it up for me I guess. Then there’s my lifeline, the bane of my life. It makes me feel soooooo old, but I have had to use it once, when I fell in the shower. My boys and a carer, who’s moved on now, were here but there was a  problem as none of them responded! They all thought the noise was something other than my lifeline – a phone message or a dial tone!!
• Doing the laundry is always a big job of washing, drying, folding etc, but I’m quite particular and my funny ways get muddled up when 3 or 4 people are doing the same job. I want some clothes rolled; my towels must never go out on the washing line; I have a specific drawer system and I like my clothes hung in a certain order. And that’s me not even me being picky! The funniest thing is that Sam often puts my clothes away inside out. I don’t really mind but one day I mentioned it to Helen. When she left, I saw that she’d put the sheet on my bed inside out and thought I wouldn’t notice – as if! As Joel puts it, he doesn’t give a shizz (sort of), but he knows how much it bothers me as a weirdo! 
• Any carers that work for me have to know how to make me a smoothie – it’s the law! They have to understand the love for coconut anything and avocados in everything. They have to know how to use maca, baobab and cacao powder and the joys of mornings and spirulina (they stain everything green!) They have to have the patience to clean my bamboo straws and make the occasional smoothie bowl. Then they have to remember every ingredient they’ve used so I can put it into my weight loss app. I’m not fussy or anything, I just don’t have an appetite and lots of deficiencies. They have to remind me to eat 3 or 4 times! 
• I’m used to a room full of chatter and do like a natter. I don’t mind alone time, but I just need a little bit of life to break the boredom of living in one room all the time. However, they only have a short amount of time here so they have to get used to having to tell me to shut up 3 or 4 times and have often been found backing out the door while I keep talking.  Then they have to make it out as fast as they can before I start calling down the stairs at them! They also have to try and follow my crazy brain and plot twists before reminding me what my point was or whether to just go with it! 
• Then there’s the wheelchair – the fun of fitting it in a small car and putting it together without trapping the seat belt in the wheel (so many times 🙈). If we get to that point, it’s not as simple as it seems, then we have to make sure that we’ve parked where I can actually use it or not. Sam’s been a carer all her life but my boys do a better job driving!! 😂 Firstly she parked right next to scaffolding which made the path too narrow. Then she nearly toppled me out down the curb with no attempt to reverse. I shrieked in time and she managed to bump me over the metal ramps instead. When we arrived at the tearoom, she parked up and we ended up playing musical wheelchairs as we found out it was booked up. When we tried to get away we were already in hysterics as a couple had watched the full show from their outside table. He ended up rushing to help when my wheels got lost in traction over the cobbles and went into wheelspin. We ended up going back and driving to an alternative!
• Then there’s the alternative remedies, Mindfulness and meditation. They bring me a herbal tea when they get here, but not if I’m meditating – then they have to leave me be for a bit longer. They have to understand bed yoga in case they walk in and I’m doing some strange movement. They have to get used to my essential oil diffuser and the coconut oil that goes on my body hair and  in smoothies. And then, only then, do they get to embrace the world of the miraculous Migracap as demonstrated below- an ice hat to help with the pain.

Me in pain in a Migracap.

I’m sure there’s more, but the main thing is that I’m surviving and they support they give me enable me to be a good mum. 

Read more about what I get to up to in my days here:

A day in the life 

I realise my support network helps me survive

Mix the combination of Joel and my boys with Sam and Helen and I have the perfect mix. I haven’t always had it easy with finding the right carers, but Sue who owns the caree agency is a very good friend and we’re all happy, she even comes in sometimes. I’m so lucky to be able to call my carers friends.

I can confide in both Helen and Sam and that is a crucial part of my care, especially on the darker and more painful days. Also, I’m still youngish so I need to be able to be friends with the people rummaging through my knicker drawer!

The vital role my friends and family play in my support network is crucial. I’ve spoken a lot about my friends in the past and how important their role is. Nothing has changed. Those friends that made the choice to stick by me are the people who keep my spirits lifted. 

I can’t talk about my support network without mentioning my Dad. He’d stay over when Joel was away from work, until recently. The boys have now taken on this responsibility. He still takes Youngest to swimming lessons and will be there for music lessons, engineering club and anything else pick ups, at the drop of the hat.

With all this support, I know someone will be there for me, whatever, whenever and wherever I need. The role each person that stands with and by me my through my journey is what helps me to do more than survive with this rare disease. I thrive!

The most important thing anyone in my jigsaw of support can do is to make sure I preserve energy for mum duties. They will all tell me off for talking too much and if my pottymouth alter ego is allowed out to play, well… I think I may have a sense of humour. I think that answers the how I cope question. You have to find the funny! 

Lastly…

It feels good to admit that I’m not always positive. I imagine you’d guessed, but if I didn’t feel safe from the support I get, then I wouldn’t be able to admit it and own it – well nearly. Getting better at understanding my lack of energy is an on-going study, but I’m learning that if I stop comparing myself it helps. This all helps me cope.

The support I have is undeniably what helps me be a great mum.. bed-bound or not. Those Friends, family members and Carers that form my support network are like the special shells that whisper in my ear at the end of every day that I did it. That I survived even without boundless energy and that my kids did even more than that!

What helps you cope with chronic pain or illness?

5 Last Chance Opportunities To Show Unconditional Love

5 Last Chance Opportunities To Show Unconditional Love

I’ve been thinking about all the things I wish I’d said or done and didn’t get the chance. I imagine most of us have have experienced this. So I’m going to talk about last chance central, unconditional love and how you can still have a loving relationship with chronic illnesses. I’ll be sharing 5 opportunities I believe we should take to show limitless love.

**WARNING This blog contains possible triggers surrounding death and loss of loved ones. So although this blog is mostly about love if you feel uncomfortable whilst reading this, please stop and if necessary, speak to a professional.

This blog is based on my own experiences. I am not a doctor and all thoughts are my own, other than attributed quotes. If you need medical advice speak to a professional.

Bucket Lists

Before we start talking last chances and unconditional love, I need to get my thoughts on  Bucket lists off of my chest and I need to ask you this:

If You Had Only 24 hours left to live, What Would You Do?

I’m asking, because there’s myriad possible answers so choosing one becomes, well, tricky! I guess Space would be a mission 😜. I guess this is how bucket lists became a thing, but I’m not one for that kind of idiot box cheese.

Photo by hitesh choudhary on Pexels.com

I mean, why write a list of things you want to do before you __⌛, when you could just get up off your arse and do them?  In my opinion, the idea’s been hijacked by social media disease and become another thing you have to have!

Don’t sit around thinking and planning, get on and do the things you dream of because one day you may no longer have a choice. If you have the chance to do what you dream of every day, then go for it. But chuck that icky bucket!

** Of course when someone is diagnosed with a terminal or degenerative illness, they should grab that bucket and do everything they can. 

Chronic Illnesses and Last Chance Decisions

Having a chronic illness can change your viewpoint and may need you to adapt your lifestyle, meaning you may miss opportunities. I think this has the potential to create a shift in your decision making.

You might:

• Grieve for what could have been or
• Choose to take a different path and make the best out of the situation
• Feel held back from taking chances
• Be left in a position you’d never imagined could be you.
• Change what you thought of as or
• Feel that unconditional love has reached its limits
• Become dependent for support with money, travel or childcare
• have your partner or child become your carer
• Feel too sick and weak and remain where you are
• Might take opportunities, even when you feel worse after doing

When you’ve been given medical clearance, be kind to yourself,  showing unconditional love to yourself before you give it to your loved ones. Please don’t let those countless opportunities pass you by just because you have an illness.

My Own Last Chances

These are the stories of last chances I wish that I’d taken had I known it. **This may be distressing reading.

As a Mummy I’ve felt the loss of my baby born unresponsive and whisked away from me. On the ward, the cot by my bed lay empty. Joel and I were told he was having a 4 hour fit. Not knowing if he’d make it or have brain damage, I feared I wouldn’t get the chance to hold my boy alive. We’re very lucky as he pulled through at the last minute. He’s more than fine now, but this still haunts me. It’s the worst last chance I ever had to imagine.

My lovely Nana

As a granddaughter I’m sad that my husband never met my Nana. She got sick not long after Joel and I started seeing each other. Sadly she died 2 weeks later, so I never got the chance. If the odds had been stacked a little differently, she would have welcomed him with loving arms and adored our boys. She’d have been an awesome Great-Nana.

As a daughter in law I’ve wished many times that my boys had been able to meet their Grandad. Nearly 14 years on I still regret that distance mattered. That 5-6 hours in a car was so far for us then, so he only got to hold Eldest once. How I’ve wish he could see how immense both our boys are and that we’d see him fill with love and pride. He’d have got to play his pranks on them and taken them on many spontaneous adventures, I’m sure.

As a wife with an incurable brain disease, I’ve seen my husband’s face as I go down for brain surgery. Surgery with a likelihood that it’s fine, but no mistaking the less than 1 in 10,000 chance of a stroke or worse. I see that last forlorn glance as our eyes meet when I leave the ward. Then I see the relief when they wheel me back.

Relief That I’m Safe After Surgery

Last Chance Decisions

When I was first diagnosed I knew one thing was never going to change. I knew that Joel was always going to be there for me as I knew our love was unconditional. I knew how strong our relationship was from when we nearly lost Youngest.

As my condition got worse, I realised that I was grieving for the last chances to live the old Laura’s life. I gave up for a while and it got messy at times, but Joel put mine and the boys needs first, much more than I could have comprehended at the time.

I can’t even contemplate what he’s been through when I was so ill. I began to realise how many opportunities had been taken away. I pushed my body but I soon learned I needed to listen to my body.

Balancing Needs and Wants

When I finally realised I needed to create balance we could begin to understand our new normal, but still be The McKees. I still wanted to do more but I couldn’t ignore the needs of my family. As I can’t plan for how I’m going to feel,

On a better day we make the most of it but then spending days in bed to recover. We take it day by day and grab every opportunity we can. I’ve realised that we can only control what’s happening, right now!

Living for Now

There’s myriad opportunities to take a chance every day. I wonder how many we miss and how many might be seen as successes, or if it’s as Thomas Edison said..

I have not failed, I have just found 10,000 ways that won’t work.

Imagine all those missed opportunities because we think there’s more time. Time to grab chances for us or to show kindness to others. We never know a situation, so little thing we do, may make their day.

Affirmations encourage us to grasp opportunities as they arise. It helps us live for the moment and grasp last chances experiences. One such as ‘I let go of fear and guilt’ help me restrain the little guilt demons that haunt me!

When it comes to the future, if I use the ‘I am courageous’ affirmation, I know that everything is going to be okay. If I say ‘I surround myself with positive people’ I know Joel will be there for me if I need him.

I’d love you to experience the freedom and comfort these cards bring, so you can grab the set of positive affirmations that I’ve made for you. They’re only available until March 31st and I’ve put the link at the end of this blog post.

Free affirmations printable download

Taking a Chance on Me

Joel and I in 1998 in my last year at Uni

Joel finished his degree a year before me and that left him having a huge decision to make. He had to base it on the 7-8 months we’d had. Thankfully Joel decided to stay in Canterbury working in a supermarket for the year.

I didn’t realise how much commitment he was making at the time and I wonder what would have happened if hadn’t taken that gamble on us. We moved to Sussex and our level of commitment stepped up a notch when we bought our first flat. 

One day we were talking about the future and he just said ‘shall we get married then?’ I seriously thought he was joking but he wasn’t, so I agreed. It wasn’t planned so that there was just a thought in Joel’s mind and he ran with it was part of the magic.

We married in August 2003 and still balance each other perfectly. He has encouraged me to take more chances and I’ve helped him be more focused and plan more.

Unconditional love

Unconditional love is a powerful term, meaning love and affection without limitations; when you’d do anything for that person no matter what. This is usually between parent and child and is the sentiment behind marriage vows; a promise to love no matter what.

Unconditional love is something you have to work at and develops over time, rather than the ideal of love at first sight – sorry romanticals. You shouldn’t ever feel like you’ve failed if a relationship doesn’t work and is never a reason to stay in an unhealthy relationship.

“It is a minute-by-minute decision by both parties to remain committed to each other… Love is expressed by a person’s actions… [and] best expressed when a person chooses to put another’s needs above her own.”

Everyday Health Article

These points are based on my experience of 21 years of very few arguments, raising 2 boys who usually handle disagreements with respect and empathy and 15 years as a Teacher. We take opportunities to show unconditional love. These are my own opinions and ideas. * However, If you feel you need relationship support, please seek professional advice.

1. Never go to bed on an argument. If an argument is over something small, take 5 and consider whether it’s worth wasting time. It could take just one of you to back down first, especially if you’re the parent.  You may feel wronged but apologising for how you reacted is likely to dissolve the tension. If it’s more serious with your partner, you may not feel ready to make up but be honest and say ‘I’m not ready to talk about this tonight.’ Try to plan time to talk properly in the morning. Then say good night. If it’s with your child/ren, tell them you love them but you don’t like what they’ve done. This needs to be made age appropriate but try to make as little drama as possible and say goodnight as usual. You can reinforce it in the morning. When you talk about it, be specific and don’t attack. Try this structure: ‘I didn’t like it when (action) because it made me feel (_). It was because (obstacle) I’d prefer it if (ideal solution). Teach your kids this too so you can all make up quicker!

2. 

   Trust and Respect

   Build your relationship on trust, honesty and respect. In any relationship you learn how to deal with conflict. This TED article (although about the workplace, it has six great tips). Positive language and actions are important to acknowledge. Reward positive actions with a note or a little treat for adults as well as kids. If you show you’re noticing the small stuff, it makes the big stuff easier and you’ll build layers of trust. Be aware of how you bring up issues within the family. It’s vital that any problems are addressed quickly and honestly. Use the structure in #1 regularly so it becomes normal. Embrace vulnerability so hearing what others say becomes much easier. Creating an environment where listening is valued is so important for building respect. When you know that what you say matters, you will become more confident and positive. When you become positive, you will inspire positivity. The cycle of positivity, reward, positivity begins!

3. Put their needs above yours. When you decide to share your life with another human, you’re making a commitment to meet their needs. You’re there to grow together in any form of relationship. As adults our emotional and physical needs can be met too by cooking a nice meal or taking them on a surprise holiday! The point is, is that you think about your partner, so my fellow bed livers, we can meet our partner’s and children’s needs from our sick beds by asking about their day. If you’ve got a busy life, don’t let this get lost in life noise, don’t take your relationship for granted. We’re all different so some of us need extra support to do this, but if you meet their needs they’re more likely to reciprocate. It may be something to discuss in your relationship.  If one person in the relationship becomes dependant due to illness or disability then this can create strain, but you can still meet your partners needs, you just need to think it through. If you have young carers, meeting their needs can be a worry, but be reassured that you can still do this. If you want some tips, read more here.
4. Be Affectionate with each other. With children it’s easy, they’re usually pretty affectionate unless their teenagers, although we still give ours a kiss goodnight. (boom, down with their street cred😜). It’s really important to make the effort in our adult relationships because “forms of physical affection…were strongly related to the…satisfaction the participant felt with the relationship and the partner.”     Psychology Today We’ve found that establishing affection at any transition, such as waking up or getting home, we’ve become more affectionate and it deepens our connection (yes still, after 21 years). Those hugs and kisses build positivity and happiness. Although some find public affection difficult, I think it’s important in a relationship; especially around your teenage children! We’ve always loved to hold hands in public (although trickier in a wheelchair). “Affection produces feelings of intimacy, security, significance, and respect in a relationship.” Everyday Health
5. Show them how much you love them.

They say that actions speak louder than words! So show you how much you love them by getting creative. Whatever works for your kids: show your love by slipping a note in their lunchbox, sitting playing Lego for hours, leaving notes on the fridge and snuggling in front of a movie. With your partner, focus on them regularly to keep a healthy relationship: giving a foot rub, sending texts during the day, writing poems or creating art from photographs!or organising a date night. And don’t forget to always listen to them! Make what you do romantic and do it at least once a week. Just don’t be repetitive. Or creepy. Or boring. Or immature. Or creepy….

In conclusion

In my opinion, if you wait to do the things you love, you may just miss that chance. Bucket lists and waiting for another day may mean that you missed your chance. If you ever missed that opportunity to show your love and something happened, well….

If you’re reading this with a chronic illness, then this can be even tougher for you to think about. I’ve tried both waiting and pushing through, but in the end I’m up for taking a chance.

Someone took a chance on me and we’ve built conditional love for each other and our boys, of course. But we’ve had many tough times and we’ve been lucky enough to make it through. I hope someone has or will take a chance on you.

I make sure my children know how much I love them every day. I make sure to kiss my husband every time he leaves the house and when he gets home.

Don’t wait to do anything, show you love your someone at every opportunity and don’t sweat the small stuff. We never know what’s about to happen…

Positive Affirmations for a Better You

You can help yourself achieve the things you want to do today using Affirmations. I’ve mentioned these above.  I’ve created a set of Printable Affirmations that would for setting the tone for a good day Grab a copy of this when you sign up to my occasionally regular newsletter today!  You still have until the 31st March to get your free printable. 

Sign up for your Printable Positive Affirmations Freebie

I make sure my children know how much I love them everyday. I make sure to kiss my husband every time he leaves to go to work and as soon as he gets home.

My point is – Don’t wait to do anything, show you love someone at every opportunity and don’t sweat the small stuff. We never know what’s about to happen! So, if you start living for now, today, then what would you choose as the first thing you’d do?

A poem for all chronic illness warriors ‘It’s okay to rest!’ #chronicillness #chronicblogs

Are you a chronic illness warrior?

Do you fight the pain everyday? Do you even get cross with your body for not doing what you want to! I do, but I’m working hard to remember that it’s okay to rest!

I hope this helps you if you feel guilty for doing nothing. Just listen to your body!

It’s okay to rest!

My body fights the constant pain
And drains all my energy spares.
My body ransoms my attempts to move
Yet soothes the grief for what was.
My body tricks my brain into a spin
Though wins with time to calm my mind.
My body taunts with glimmers of light
When nights are long and sleep is gone.
My body is learning it’s okay to rest
But tests the deal that I’ve made to heal.
My body and mind still fight the pain,
But gains most when I concede to rest.
Now I believe that it’s okay to rest!

Copyright Laura McKee 2018

 

Reminder to self of my New Year’s mantra

I decided in January this year, not to make resolutions but to have a mantra!  ‘YOU GOT THIS!  was all I needed for 2015! It’s now July and to be honest, I thought that I would have had my operation by now, considering that they said early spring; then late spring/early summer. The last few weeks have been starting to feel like I’m losing control again; like I’ve got no date to work towards; no end in site! 

This picture came up on my news feed today to remind me of that mantra that I made 7 months ago and a little bit more. Not just that ‘I got this’ but to ‘Take it day by day’. I’m not very good at that. As a teacher; I’m a planner. I love planning. I LOVE writing lesson plans; spotting things in shops that would be great for ‘such and such’ topic; keeping boxes that are interesting shapes; storing different textured paper; pinning ways to use baking soda on Pinterest; even planning what we’re doing on holiday each day on the day we arrive and I get to look at the brochures! I’m a planaholic! 

But, I can’t be like that anymore. I don’t know how I’m going to feel when I wake up. I don’t know if I’ll have been awake most of the night with painsomnia. I don’t even know how I’ll feel in 10 minutes time. And do you know what, my husband loves this new side of me. My kids told me that they love that life is ‘more chilled out’ now! I think that this is one of the many lessons that I’ve learnt from this illness. I still get carried away sometimes and try and plan what we’re going to do at the weekend or on a bank holiday but I soon get told to wait and see. I still plan it in my head but I what I have learnt, is to not be disappointed if I can’t do the thing I’ve been secretly planning in my head. And sometimes I just rebel against my illness anyway and go and do what I want to do (with readjusted ideas of how long I can cope with being out etc) because life is too short and I’ll just pay the consequences by having to stay in bed during the week when no-one else is here! 

  

So I will just have to take each day as it comes and be patient and hope that we will here some more concrete news soon about my operation. If I can just have a rough idea of when it might be; then I might feel less anxious about it. I might stop worrying that it might not even happen and that I’m going to be stuck like this in zombie land forever! So, fingers crossed that my consultant responds to my occupational health doctor’s request with some news that will clarify what is going on so that I can at least just have some tiny element of control over what is going on. Yes, I will take it day by day, and yes I know I GOT THIS but just a little sliver of hope is needed to help me get through each day as it comes.