Tag Archives: sick

For the first time in forever.

I am writing about this because otherwise I may forget it ever happened and then it won’t have existed. Yesterday, for more than a few fleeting moments, I felt like ‘me’ for the first time in nearly two whole years. It is a fucking miracle. Isnt the universe great? Last week I was falling into a pit of despair and hopelessness, I was contemplating that if this is as good as it gets, because the here and now in this  moment is all we can rely on, then how can we judge if it is good enough for us in the long term?

So for just a few moments, a few different ones, probably adding up to about 10 minutes all in all, I was ‘me’. I felt enthusiasm, I felt in control, I felt hopeful and happy as I used to. See the main photo – which was taken a couple of years ago before I got sick, before everything went wrong, before I forget how to feel like ‘me’. Now I am working to getting back to also looking like the old ‘me’, begone steroid bloat and acne, bring on the fresh veg and good old water. The weather is improving so the urge to hibernate is lifting, walking seems more appealing and the sun really helps with my pain, so in the now, today, right now, I see that there is hope, that things can get better, that being sick is not the death sentence is sometimes feels like and that feels amazing.

I wanted to let other spoonies out there know that things can get better, really, don’t give up. xxx

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Tired of looking at myself, wishing I was someone else

The true cost of chronic invisible illness. And I’m not talking about the strain on the NHS or the economy due to lost days at work.

I’m talking about the personal cost. I read a piece recently about a woman who had had her  Disability Claim denied because her assessing Dr decided that, after viewing her pictures on social media “the person depicted in most of these posts appears to be a young woman who is engaged in life activities, awake, smiling and alert. They do not appear to depict an individual who looks chronically ill”. He saw literally a snapshot of her life, he didn’t see the other 23 hrs and 55 mins of her day, the effort required to look happy, force yourself out of the house, to endure the ever constant pain and exhaustion is impossible to impart. Every day is a struggle, every single day.

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Ahhh when I went blind for a few months

My relationships have suffered, with my friends as, after a day at work, all I am capable of doing is getting myself home, getting my child to bed before I am literally on the floor with pain and exhaustion. So no more socialising for me unless it is in very short time frames, I have had to cancel plans so often that I just don’t make them any more. With my partner, a lot of the time, merely having my hand held hurts, I think you can see where I am going with this. He is a loving and patient man but why should he sacrifice his needs because I am ill?.

I was off work sick for a substantial amount of time and while my employer was very understanding I do realise that being a team member down impacts on the business and my colleagues, the anxiety of staying at home is real, it isn’t an opportunity to put your feet up and relax. I was due to start my Phd in January of 2016 but had to defer due to my newly diagnosed illness and I commenced in September instead. Today I saw my Supervisor and after discussions had to acknowledge that I am going to have defer this semester too and start again in the September of this year as I cannot keep up with the work required. I cried about this and I am not really a crier.

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Lots of lovely meds

I am not the mother I was or want to be. It was Lulu’s birthday last Friday and I promised her a trip to McDonalds after I got home from work and hospital (I’m in the middle of a 8 week treatment course). By the time I got home I was so exhausted and in so much pain  that I was shaking and couldn’t think straight so I lied to her and told her that McDonalds had flooded – this has actually happened before when it rains- and that we would go the next day but Saturday came and I couldn’t use the last of my energy driving there as we had to drive to a friend’s house for Lulu’s dinner, I am constantly having to make choices based on my energy and pain levels which is acceptable but of course as a parent, and friend and partner, these choices impact on others.

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Can never find a vein

I had a brain procedure sone on New Years Bank holiday Monday but my veins are so bad they couldn’t get the cannula in, after a number of goes they managed it but by the afternoon the bruise was enormous and black, I couldn’t keep it disgusted so Lu saw it and was clearly concerned, it looked awful. Why should my child have to see these things? She is 6 years of age, she shouldn’t think her mum is sick. Last ear I had Erythema Nodosum all over my arms and legs, big painful red swellings, I couldn’t have Lu on my lap or hold onto my arm because it hurt so much. How frightening for her that must have been? Not being able to cuddle mummy when ever you want because you will hurt her?

As a side issue my vanity has suffered greatly. Months of being bed ridden and increasing doses of steroids have left me overweight, bloated – hello moon face !- and spotty, thanks for the steroid endured adult acne. Lulu announced the other day that my tummy was so big it looked like I had a baby in it but that she knew I didn’t and that I was just very big – I’ve had to coach her endlessly on not using the word ‘fat’ as it is hurtful to people. She also added that her dad’s girlfriend had a very small tummy because she wasn’t big – thanks Lu, I just has t0 smile through gritted teeth and agree.

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Back in bed

I can no longer walk very far, before slowing to a snails pace as it is very painful but I walk as much as I can, you know cause its healthy and all that. I spoke with my GP about applying for a disabled badge for parking so I could park closer to the station so the walk would be sorter and the amount of pain I would have to endure would be lessened but apparently I don’t fall within the criteria, the ability to walk more than 50 metres means no badge. I can walk more than 50 meters, in agony, and pain that is so exacerbated that it remains with me most of the day. I am one of those people that fall into a grey area. The fact that I go to wok every day appears to mean that there is nothing wrong with me, that I need no other support or assistance. I go to work, because I have to, not because I necesarily feel well enough to do so, I have responsibilities, a child, a mortgage and it’s just me and my daughter.  So essentially unless I am entirely bed ridden I am not eligible for any assistance. The fact that a day at work (see feature photo of me on train home) means that the other 12 hours of the day are  written off is irrelevant. Cleaning my house is a painful exhausting  and very time consuming event, so I am caught in a Catch 22. At the moment I feel like I am merely existing, functioning, getting though one minute, one hour, one day at a time. Doing the practical and necessary things as far as I can and then there is nothing left for ‘me’. My Phd was for me and now that has had to be shelved.

This post isn’t about self pity, I don’t feel sorry for myself, I feel upset and frustrated and tired and old and frightened. I never thought that at 42 I would feel this way. Never.

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Getting dressed & putting on make up took all my energy that day

So the long and the short of it is just because I look ok, just because I go to work everyday, just because I smile does not mean in any way that I am actually ok. Invisible illness is real, it affects 1000s of people, trust me when I say that I do not feel good. I am trying my best, my absolute best, I cannot explain how hard I am trying.

 

 

I just want you for my own, more than you could ever know

Oh my darling Lucia, we have just spent your 5th Christmas day together and it was a privilege. You were so excited about Santa’s visit that you barely slept on Christmas Eve, which of course means neither did I, thanks for that!

I was up until 1am wrapping your presents, listening out for your little footsteps in case you appeared in the living room and all the magic was lost. But you managed to stay in bed asleep until 3am so I filled your stocking and left it on the end of your bed and snuck off to my bed hoping for a good rest before the fun and games began on Christmas morning. But it was not to be and 3 am rolled around too quickly.

I haven’t been feeling very well at all these last few weeks which is why I have been a bit tireder than usual and walking bit slow that usual. I have been trying my best to keep it from you, I don’t want to tell you am sick again because I don’t want you to worry but I don’t want you to think that I don’t want to play with you. I am trapped in an impossible situation.

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After your Barbie Dream House was constructed yesterday, 3 hours – thanks to your dad for delivering it un built!! – you asked me to play but by that point I was literally on my knees with pain and exhaustion, lunch had been cooked and eaten and I fell asleep on the sofa, the pain in my legs woke me up and there you were with nanny, happily playing with your toys. “Play with me mummy” was the refrain of the day and I kept saying ‘ later darling, I have to cook lunch” ‘later daring, I’m a bit tired’ and you looked so crest fallen, you were so patient, I prayed for time to go faster so it would be time for you to go to bed and I could stop refusing you play time with me. I never want to wish away our time together but I didn’t know what to do, we put on our pyjamas and got into my super king bed and you watched youtube toy reviews while I cuddled you and I silently cried while you sat on my lap, it was the worst day of parenting I have ever had, I let you down, I wasn’t the parent you deserved, luckily I have a streaming cold so you thought I was just sniffling as usual.

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You are so precious and amazing and I couldn’t give you the thing you deserved and needed, my undivided time to do with me as you wished. That is the real price I pay for having a chronic illness. It’s not the lack of ability to have a social life, its not the frustration at the endless pain I cant control, its not the fear of a liver transplant, its the fact that I cannot be the mother you, my child, needs and deserves. I can never have that time with you back again and all you will remember about this year’s Christmas day is that I didn’t want to play with you. As the time passes I hope that is not the thing that stands out, let it be the big tacky dolls house with ALL the sound effects, please.

Lucia, I love you so very much, more than I can express, there is no one else I would like to send my time with. As you left with your father this morning to have Christmas with him, my heart broke and I wanted the time back again, I want to be well, I want to play Barbies with you.

Working 9 to 5 what a way to make a living

Oh Dolly, I hear ya but, make a living we must, I need to keep baby Lulu is shoes!

So, over the last few months I have been prodded, poked (*snigger*), biopsied, MRI’d, CT scanned, blood tested and x rayed , become a regular at Stoke Mandeville Hospital (an average of twice a week!) Seen five consultants from five departments across four hospitals and now, having looked at all the test results and at all my symptoms a treatment plan had been put in place that I am happy with. It deals with my various conditions and diseases and hopefully will get me fighting fit again, or at least conscious and walking. So I decided it was time to go back to work. I spent three weeks preparing myself and I worked my ass off to be the best version of myself when I got there, healthy, energised, organised and happy.

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I understand that these things don’t just happen by themselves so I put in place some things to help me get to that ‘place’. I took the plunge into learning how to meditate and did an intensive private course with a lovely lady called Emma, she trained with Zenways. It was brilliant and I am now on day 15 of a 30 day meditation challenge, Emma and few of her other clients are doing a 100 day challenge, if you miss a day you go right back to day one again – now that is what I call  incentive to keep going.

I bought myself the Magimix blender that I had been coveting for months (thanks to Deliciously Ella blog) in order to make smoothies to have along side the juicing I already do. I started getting weekly Abel & Cole deliveries. Initially I got the Green Juicing box and a medium Keen Cooks fruit & veg box. Since I’ve been poorly I cant guarantee when I will be able to leave the house or when I can drive so having the boxes delivered every Monday takes the pressure off and they are great quality  and value for money. But I now have changed to small Keen Cooks box as I couldn’t get through all the produce and am now trying the Smoothie and juicing box. I already have a monthly big delivery from Tesco on payday that includes the heavy stuff, washing powder, cat food, loo roll, tins of bean and pulses etc. Essentially all pantry, fridge and freezer goods.

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I put of weight with the help of the steroids – thanks for that, not. But instead of wearing my usual clothes that felt tight and uncomfortable I decided to give myself a break and bought some cheap and cheerful dresses at Boohoo a size larger than usual and they fit perfectly, I’m not going to beat myself up about gaining weight, I’ve been poorly and denying myself chocolate was not high on my list of priorites. My delightful beautician came over and de haired me, bikini line and all and the wonderful Miss Merx come over and gave me a blissful mani and pedi. These are not things that I do all the time, I do not have lots of spare money,  who does? but it was important to me so I treated myself. And I felt great for having done it. I’ve found a wonderful dog sitter who Livia will spend Mondays with and a holiday in Grenada coming up in June to look forward to so all in all this return to work lark hasn’t been too bad!

My first day back was Wednesday last week and it was daunting, like being the new girl again, but it was actually really lovely to be back. I really enjoy my job and the people and I work with and I’m lucky enough to work with one of my besties, Alex Reid, so going in rarely feels like a chore. I won’t lie, I’m still not tip top, I’m in pain on occasion, I’m tired and to top it all Lucia has been really since last week, again, and been off school. She threw up all over me as I was leaving for on Friday which meant another shower and 30 mins late but it goes with the parental territory doesn’t it.

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And just as if the universe needs to remind me that we really can’t control anything Lucia is still sick and now so is my mum, so I’ve had to stay home to look after Lu!