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Anyone need a Spoon??

Beginning at the beginning

** Warning – this blog is unlikely to be filled with sunshine and happy thoughts **

I need an outlet, somewhere I can moan and complain to my heart’s content. Somewhere that doesn’t burden my family and friends even more.

I was happy. I had survived the hardest three years of my life (little did I know what was coming) and qualified as a Midwife. A Midwife with a capital M because I was proud, I could hold my head up and know I had achieved something that I had dreamt of for years. I could support women and their families throughout their journey​ to parenthood or support them if things went awry. I could share in their joy and try to ease their worries, fears and sadness. I could catch babies and give all that I could and become someone who would make a difference to people. I made it through those hard years of studying and working clinically because of the support of my children and my amazing family and friends.

Things should have got easier. 

Things could have been great.

I could plan and think of amazing things… 

Florida for the kids after a few years of saving.

Then my crazy forties once the children were older, with travel and beaches and cocktails and seeing the world (all between midwifery shifts!)

Then in 2013 I had an episode of the most extreme pain, it lasted a whole night. One of the longest nights of my life up to that point but now unfortunately a frequent experience. Things started to go wrong with my health. From that one night of pain it continued but I still managed to work and loved it, but I struggled at times because I was utterly exhausted and had episodes of awful awful pain.

In 2014 they worked out I had pitted areas in my gallbladder so this was removed. I got an infection and ended up back in hospital two weeks later.

The pain didn’t go away, I now always had some sort of pain. Whether it was dull and irritating or spiky and tense or excruciating it was always there.

2016 comes and I develop a new symptom, diarrhoea. Anything I put in my mouth made me immediately need to go, nothing stopped it even if I didn’t eat it would still happen. I ended up in hospital after almost three weeks, I had lost over a stone in weight. I was unable to work.

A CT scan showed inflammation in my small bowel and a stool sample showed inflammation. They decided it was Crohns Disease  (a form of inflammatory bowel disease) and started me on steroids and discharged me. I still felt awful but it was only when the steroids stopped at the start of this year that I realised they were doing something. 

Since January I have been more and more unwell. Follow-up scans and scopes (upper and lower gi) couldn’t find the inflammation and my gi wanted me to stay off the steroids so he could find the inflammation and confirm the diagnosis.

I feel like my life has been destroyed. I can’t get out of bed some days, even getting dressed is a struggle. I worry about being away from a toilet, the diarrhoea is less than at the start but I still go up to ten times a day.

This is my life now with an undetermined chronic health condition. This blog won’t be full of sunshine but it will give me some peace and maybe one day someone else who is having a horrible time might get some peace from knowing they are not being alone.

Now my life is limited to Spoons (Spoon theory) and never making plans because I don’t know if I can fulfil them and I hate letting people down. I feel I’m losing my grip on my amazing job and my wonderful work colleagues, I worked so hard to qualify and now I can’t even leave my house most days and haven’t worked for months. I feel like I’m a burden and feel awful for what I’m putting my friends and family through. I feel like I’m losing some of them too.

Life with an invisible illness is hard. Harder than the word hard, harder than anything a well person could ever imagine. Hard, relentless, ceaseless, cruel.

This will be my outlet. And as long as this post is I feel better for writing about it. Well done if you managed to read it all.

If anyone needs a spoon feel free to shout about it to me πŸ₯„ I can’t reload your spoons but at least you’ll know you can get it off your chest ❀️

Strength, hope and love

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.

Fiction

Tonight I’ve started reading another book and on page one it spoke to me of the phoenix…

I’m a big Harry Potter and have always been a reader so feel like the idea of rebirth through a rite of passage, a trial or from flames isn’t anything new but I’ve been so broken for so long now that the idea of being “the same, but altogether different” felt more hopeful than it might have otherwise.

I know I have been irreparably damaged over the past four years and I could never hope to rise from the ashes of my former self like the phoenix of lore; but to think of maybe one day being able to live again and to still have managed to hold on to a shred of me is at least something.

Life feels like one big challenge that I’m failing at most of the time. Maybe I should try and hold on to that phoenix inside.

Week three on prednisolone

As I look back on week three I realise that my head is clearer, I feel myself trying to find quantifiable signs of progress or otherwise. A clear head sounds like no big deal if you’ve never experienced brain fog. Brain fog isn’t just a fogginess in your thoughts but is more like someone has poured treacle over your synapses, everything is slower or delayed or just plain out of reach.

Being able to look at the week objectively is a strange feeling, normally I can’t even remember something from five minutes ago so being able to crawl through the treacle to remember what I did each day is very different. I had some wonderful days, days when I napped and my spoons recharged and I could be out and about but also days where I couldn’t do anything at all. The days I couldn’t function this week felt exceptionally hard, I felt pointless and utterly miserable, maybe that was a consequence of the clearer head too and if it was it’s the only time I’ve been able to appreciate the benefit of brain fog. Maybe the fog is there to protect after all, if you can’t think it then you can’t feel it.

So week three was better than week two. It gave me 2 days of no function, 3 days of limited function and 2 days of really good quality of life. And I grabbed one of my good days with both hands and went on a trip on the river! I did then have to poop in a stinky echoey public toilet but at least I managed it.

I’m starting to get really terrified about seeing my specialist at the end of week four and I’m so so scared that this improvement will disappear as the prednisolone reduces further.

Please God, let me be well. Desperation is a horrible feeling but I’m so there.

Week two on prednisolone

So once week two on prednisolone had started I was starting to feel like not much had changed after all. I was back up to many frequent toilet trips with watery diarrhoea and plenty of pain to have to try and deal with.

My body seems extremely determined to overcome whatever treatment option is thrown at it and does it in an extremely quick fashion. Immodium and codeine as the front line attack just didn’t do anything at all to stop it, budesonide gave me a couple of days of a clearer mind but no bowel relief, mesalazine gave me two days of thinking it might be doing something before ceasing to have any effect and prednisolone seemed like the wonder drug after a few days but then rapidly declined again. If my immune system wasn’t attacking me I would be so impressed with it!

Reflecting on week two of prednisolone is a strange one. I called the IBD nurses again this week to update them on my progress and I felt like it was just pointless and all unravelling and we talked about possibly moving the treatment forward again but now I’m thinking maybe I need to persevere for another week and see if prednisolone has something else up it’s sleeve. I hadn’t factored in how infrequently I’m needing to have a nap now and that’s changed quite significantly from falling asleep every day to only really happening a few times this week so that’s a positive. I still have frequent watery diarrhoea and pain that needs tramadol or heat but maybe they will be the last things to go?

The insane sugar cravings have disappeared and I’ve not had any crazy eating sprees since midweek so hopefully that means my body is settling down to work with the prednisolone now. I have been mega shaky though and have a very definite tremor.

I see my consultant at the end of next week when I’ll have been on the prednisolone for four weeks so will see what he thinks to it all but I still just wish to be well.

Come on week three, please be the one I’ve been waiting for!

Week one on prednisolone

Just over a week ago I was switched to prednisolone to try and control the awful pain, diarrhoea, exhaustion etc that my colitis causes, 40mg a day for two weeks then reducing it down by 5mg a week until hopefully I’m off it and stable! Fingers crossed I’ll be stable anyway, nothing has been straightforward so far with my microscopic colitis so who knows if one of the most horrible drugs to treat it is actually going to be the thing to sort it out.

Eight extra pills a day for fourteen days. I can do that right? Well day one I tried to take them a couple of them with my morning cup of tea, stupid stupid stupid idea! πŸ˜―πŸ˜‚ They stuck to the roof of my mouth and on to my tongue, they tasted completely awful! So then I followed the instructions on the pack and took one at a time with a glass of water, I could obviously still taste where the first pills had been so really started to wonder if I could manage these pills after all! It’s taken until about day six to feel ok taking them rather than repulsed. Lesson learnt, follow the instructions!

So taking them now isn’t an issue but what about those awful side effects and my symptoms?

Days one and two were basically just spent sleeping, watery diarrhoea continued as well as this inability to stay awake.

Days three and four were astonishing, I managed to shower and get dressed and leave the house! I did then sleep all afternoon but at least I had some proper quality of life too. By day three the amount of toilet trips had halved to six and by day five I didn’t even open my bowels at all!

Days five to seven haven’t been amazing I’ve had to use tramadol and oramorph to help me cope with the level of pain.

So two sleeping days, two good (half) days and three horrendous days. It’s the biggest improvement I’ve had since it all began.

Fingers crossed for week two πŸ‘€πŸ‘€

Dodging the bullet

So my big scary meeting with work almost had to be cancelled as I was so ill but with the help of my amazing mum we got there.

And my wonderful union representative wrapped them up in procedure and has managed to buy me some more time 😌

I could feel terrible about this because of how short-staffed they are across the country, I could feel terrified of what is to come but actually I just feel relieved and I can’t help it but also a tiny bit hopeful.

Relieved that the structures are in place to support me as a newly disabled person so they can’t just dispose of me like I’m worth nothing now and hopeful that maybe this delay will be the one that makes it possible for me to return to work.

I’ve had two sleeping days, two good days and three bad days since starting on prednisolone so I’m hoping those numbers start to switch around soon so I can start to take my life back from inflammatory bowel disease.

I have a house full of sleeping children, dogs on my lap and around me and a relaxing day inside avoiding the storms planned. IBD can just forget about me today.

Missing in In-action

I’ve been trying to deal with not wanting to eat, managing medications and switching things around to try and help me.

But it’s just hit me that it’s my final review meeting for work tomorrow and I could lose the career I studied and worked so hard to build. It’s been so far in the back of my mind with just trying to function and cope that I’ve not been sad about it but now I am. I’ve finally started on prednisolone steroids this week have started to feel better for parts of the day, it sounds small but to me it’s enormous. It’s all too little too late again. It seems to be that have a small step forward and then a huge stumble back again.

I thought I had settled things in my head so that I didn’t mind taking some time out, time to get my medications and colitis under control and maybe look in to further study in case I’ll need to try and be a theoretical midwife rather than a practicing one. But it just hurts; I want to catch those babies, I want to see the joy and relief on those women’s faces, I still long to be a midwife, the one to care for women of all ages and backgrounds – with love, respect and compassion.

What will be will be now, the management will have already made their decision and this meeting is just a tick box exercise to make sure they’ve covered all the right policies and to tell me my fate.

Until the next time, I may have to have tried to redefine my sense of identity by then or I may have more time. But either way I know I need to just try and focus on being well, nothing will change my children’s lives more that me being well again. Even if I’m not a midwife by then. My role as their mum is infinitely more important than anything else.

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 naΓ―ve, 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 πŸ¦„ 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 πŸ’©πŸ’©πŸ’©

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 ❀️❀️❀️❀️

Fatigued, exhausted, depleted

Fatigue: extreme tiredness resulting from mental or physical exertion or illness

Saying you are tired when you are chronically ill is a funny old thing. You don’t really mean tired, you mean spent, completely and utterly done in, exhausted of all reserves.

And really it’s because we just don’t have any reserves at all, we can’t be depleted of our energy because we wake up at a level of exhaustion and spend as long as we can battling to stay focused, upright or conscious.

I was awake until after midnight with my daughter who has her first period and was really upset with cramps and then I was awake again at 4am when my eldest arrived home from work.

I was as alert and awake when I got up at 4am than I am at any other time of day or night, it’s like there is a level of on and a level of off but the batteries are running out so even the on isn’t that bright.

It’s funny to try and remember how it was before; how you could have a nap and then be good for hours or go to bed early and wake up bouncy and refreshed (not sure this was ever me πŸ˜‚)

Now, however, I’m back to working at the off position; it’s hard emotionally when there is a bright sunny day outside and there are so many fun things going on in my area today that I wanted to take my children to but I know I’m spent already. And I know for my mental well-being that I should focus on the fact that I managed to peg some washing out and drive to the local shop to get some milk but it seems such a waste that those are likely to be my sole achievements today.

I do love the sight of clean clothes blowing in the breeze with a bright blue sky above them so I shall put that image in the forefront of my mind and try and only focus on that whilst I have a lie down and pray for my painkillers to work today.

Life moves away

You know the saying “life goes on” well with chronic illness I’ve realised it’s more like “life moves away”.

Life is still happening but it’s almost on another plane, something parallel and close by but untouchable and distant at the same time. Seasons change and birthdays and holidays come by but it’s like time is moving away from you, time is not passing or being experienced like it was when you lived it alongside everyone else.

This week I appear to have decided somewhere in my head that it’s March (it’s currently almost August). On three separate occasions I have referred to March or that it’s April next month. Then when I’ve realised that I’ve said March and that it’s not I have corrected it to May 😣

It’s good in one way as life isn’t escaping me or running away with me but it’s definitely odd.

Things have been very low and dark at times recently and my pain has been morphine level quite a lot over the last two weeks but every now and again a good idea strikes me and it makes me hopeful. Hopeful that I’m going to be productive, useful even if it is only for myself. An idea of a little something to try and ease my suffering when it is at its worst that occurred to me whilst at my worst.

That one thought makes me realise that even when I’m in such pain I can still think of something good, still reach for something else helps me feel the tiny light of hope.

May there be lights of love and hope to all who need it xxx