Realisations as lockdown relaxation starts

I live in the UK where we have been in lockdown for just over two months now. Our Prime Minister has announced the start of easing to lockdown and instead of feeling good that things might begin the slow return to normal life I’ve realised that I don’t really want lockdown to end.

I’ve been chronically ill since August 2016; my days are a mix of groundhog days – in bed in awful pain, on the toilet with diarrhoea or dragging myself through the treacle of brain fog and fatigue. I don’t always manage to shower or bathe once a week. I don’t always remember important events. I can’t leave my house whenever I want to.

Lockdown has protected me from feeling like I’m letting people down, it’s levelled the playfield so even on a day when I’m unable to get out of bed (except for the toilet) I’m not having to explain it to anyone. No-one is calling round to see how I’m going and thereby unintentionally reminding me that I’m a mess and making me see how crappy life is right now.

My life isn’t all that different to everyone else’s right now.

I’m frightened of lockdown ending. I’m scared of being reminded all the time that everyone else’s lives are moving forward whilst my groundhog life continues. I hate living like this and being helpless to improve things. My health isn’t something I can control, I’ve tried everything from diet to acupuncture and an awful lot of pharmaceuticals.

I didn’t realise how much I loved my life until it all fell away, no matter how hard I tried to cling to the wreckage it just left me. An empty shell left on a dusty shelf.

My life isn’t all that different to everyone else’s right now

I just want to hold on to that.

A rose by any other name

So I’ve had a horrendous few weeks; fatigue off the scale, barely enough money to pay my bills, diarrhoea all the time, a stroppy pre-teen and news that my son is leaving home for university.

But I’ve finally got a diagnosis! I received a letter from the hospital telling me that I have ulcerative colitis, a form of inflammatory bowel disease. I can’t tell you how much this has improved my mental state, I was on the floor. The only light in my life was my children and even they were suffering because of me, having to prepare their own meals and constantly feeling like they needed to check how I am.

But a diagnosis changes all of that, I have today started another new drug but this one is finally treatment!! Not symptom management but actual treatment, I’m not being naïve, I know so many people have major problems finding the right medication, I know some people have serious ongoing issues even with treatment. I know deep down that this still might be my life, forever and always. But right now I am throwing all that aside and being truly and utterly thankful that after almost four and a half years I finally have a diagnosis, that it hadn’t all been in my head, that I am not feeble and pathetic and all those other things that I have been telling myself but that I am truly ill; that I really do need people to help me and that doesn’t make me a waste of space or needy, it just means that my life will be different to how it was and that it will be ok.

I still do have that part of me that is just full of all the wishes; I wish I could stay awake, I wish I could go out, I wish life was easy; I wish I wasn’t putting my children through this; I wish I could be honoured with being the first person to congratulate a family on the new baby that I have just welcomed in to the world with them. But wishes are like fishes and I need to can them and focus on being grateful for now. And Lord God I am thankful.

I hope I never forget the days, weeks, months and years that have passed but I hope that I will be able to rejoin life now; a new person, a better person for my suffering.

Maybe my blog will now the all rainbows 🌈 and unicorns 🦄 now but I really think it’ll be as bumpy as it has been already and that my blog is still likely to be full of 💩💩💩

Can’t resist a My Little Pony photo there! With the reference to a Rainbow (Dash) and alicorn (unicorn) all demonstrated in one image!

I hope someone reads this that has been where I was and realises that hope is still worth clinging on to, even when you feel like the rope you are holding is slipping and that maybe just letting go of it is easier.

Someone has always been there before you, most of them have found a way through and so can you. Much much love and strength ❤️❤️❤️❤️

Useless and listless

I am a burden. I feel it, I see it and I know it.

I try to dismiss the thoughts in my head but I can’t when they are true. I’ve been clinically depressed before and told myself I was a burden and made myself more and more unwell until my turning point arrived but this is different. I can’t do things to look after myself and it’s just too much to watch my family struggling and suffering. 
I applied for helped from the Government, Personal Independence Payment; it even has the right name for me. I want to be able to pay someone to come and help me live independently, to manage the cooking and cleaning and shopping and to take that strain off my family. But they say I don’t need any help with anything and didn’t even give me even one point in any area. It’s​ soul destroying to basically be told that you are fine and it adds to the helplessness and despair that an undiagnosed long-term painful illness creates. I want to be well. I don’t want to live on benefits. I just want to live. I can’t be a burden forever and I can’t see a way out.

I read about someone that killed themself because of chronic pain. I can see why they did, it’s awful for those that love them but it’s awful for everyone when you are here and they would finally have been free from the exhausting and endless circle of pain. 

Please don’t think I’m suicidal and I’m not thinking of harming myself – my body does that enough by itself. But awful as it is this illness has awoken an understanding that I could never have reached without it. I used to think suicide was a bit selfish but now I feel that maybe sometimes living is more selfish. I don’t want to go, I don’t want to leave my children but all I am is a burden and I’m too selfish to relieve that burden.

May God in his glory give me strength to continue fighting to get well. But even more importantly may He give those I love strength to go on.

Broken heart

My heart is broken. 

I love my job, I love everything about it. Even the days or nights I’ve stayed late and unpaid to continue care or to support someone. Even the times it was awful.

I might lose my job, my career, my future. All because of an illness so horrendous that it’s breaking the hearts of my family to see me like this. But an illness that won’t follow any rules that the doctors can identify, an illness that hides itself deep inside me and destroys my life, plans and dreams. An illness that the government won’t acknowledge because it has yet to have a name so they rejected my claim for financial support. 

My heart is broken.

I just want to be well. I want to go back to my job.