Friday 28 August 2015

An update from Chloe!





Dear Friends, 

I'd like to start by saying a HUGE thank you to everyone who has donated to our cause or shared the page. I am quite blown away by the names that have been popping up! Up to and including the lady who allowed me to clean her already spotless house so I could earn my Brownie badge!! Thank you to them for supporting me in two vitally important life events. The first of course being receiving my hard earned Brownie badge! 

I feel so incredibly blessed that everyone is being so kind by sharing the page and often writing the most beautiful few paragraphs to explain why they are asking people to contribute. 

Amelia-Rose only has a week of her school holidays left and I cannot believe how quickly it has flown  by. I knew going into the holiday that it would go quickly but I had no idea it would be this fast!! 

I have fought very hard to be involved in as much as physically possible with Amelia-Rose during the holidays as I was determined not to miss out. My goodness though it has been tough. I have experienced for the first time the feeling of ''I'm not sure if this is worth it''. Of course the answer is ''it absolutely was'' but there have been times when I have been sat somewhere cold and wet with my joints aching and tummy hurting watching this that or the other thinking ''Ooooh, I'm not sure, I could be at home in the warm!" 

I think I need to learn it's ok not to do everything. No parent does everything. Most children only have one parent with them most the summer as the other is working so it is ok for me to miss things. For me now not joining in is a failure. I guess because I'm not doing something because I can't not because I don't want to which makes it a whole different ball game. 

It is hard as a disabled parent to let go of what you can't do. You get so use to adapting everything all the time, making small changes here and there that when you face something that you just cannot do it can feel like a wave of frustration, anger, anxiety and sadness washes over you. It's the ultimate defeat. 


What I need is to plan ahead so I make the decision not to do something and I don't feel as if it is being taken away from me. 

Tony would tell you I am battling with myself at the moment. I keep talking like I have any control what so ever over my illness. For instance the other day in bed I declared that I was going to make two chocolate cakes (one for the milkman for going easy on us with our bill and giving us time to pay it off and one for my family who were arriving for a week's holiday here) go down to our allotment and tidy Amelia-Rose's bedroom. 

First of all though I needed to have a bath. Tony ran my bath whilst I got myself ready. It is getting harder to get into the bath but the bath board helps. The bottom of our bath is extremely slippery though which is lethal. I've slipped and hurt myself many times. This is the perfect example of ways money from go fund me could help make adaptions around the house that you used to be able to get on prescription from the occupational therapists but now can't as the funding was cut.  

Last year I was told I would be given a trolley which would solve the problem of how once I have cooked dinner I can get it to the table if Tony isn't around (because 9 times out of 10 he is down the doctors sorting prescriptions for me!!) the standard ones they give people you push like a normal trolley and are not designed to weight bare. That trolley would become my walking aid so would need to never tip up. Impossible expectations for the old trolleys.  

I was so excited when I was told about it but it turned out they actually didn't have any in storage that became walking aids and I couldn't get the funding for a custom made one. *sigh* So we are back to me having to serve up and hobble along very unsteady with hot food in one hand trying to lean on my crutch and holding the other crutch. Easy it is not. 

By the time I got into the bath I was absolutely shattered. I couldn't wash myself because my arms ached too badly. I lay there exhausted watching each of my goals for the day float away with the steam. I needed help washing which is a huge point of sensitivity for me. I know I am at the point now that I need help with my personal care (getting washed and dressed) but I don't want Tony to help me because for me that crosses over the line too far from husband to carer but he is my carer now, he left work to become my full time carer therefore I need to accept his help. 

I don't want him emptying my bag or doing my catheters when I am too weak to get out of bed (which has happened recently) but similarly I don't think any of us could cope with someone from outside coming in to help us.

We do need help though. Without doubt. This is something I have learned in the past few weeks is that we need a lot more outside help then we get and we need to accept that we cannot do it all. I expect it is much harder for Tony because he is a traditional man. He protects his girls and he provides for them. Having already lost the ability to provide financially because of my illness I think doing it all alone has been Tony's way of showing the world he could. 

Now though we need help. We need people to come in and do a deep clean with us. On the surface the house is often very tidy but beneath the surface and it's chaos which seriously stresses me out! 

Admitting you need help is huge though isn't it? Is there really anything personally bigger to do then ask for help?

Health wise thing aren't fantastic. I now use disposable catheters as my bladder has ceased working but they leave me sore and an infection I had was horrible. This sounds bizarre but I keep being shocked by how awful I feel! Literally I will wake up or do something and feel so rubbish and it shocks me. It also shocks me how little I can do. 

On an increasing basis things that I did all the time before or did often I now can't do. Typing this has taken me 5 attempts because mentally I can't sit for long and process things. My hands would also not allow for me to type for so long without punishment. 

When I think back to where I was this time last year I was much better then I am now and then I had even more ''stuff'' inside me and was more physically able then I am now. Last year my health declined to the point where I couldn't even lift my head off the pillow for long. I certainly couldn't get out of bed. I suppose my fear is that when I became that unwell I was coming from a better place then I am now and if I were to dip to the same degree goodness knows how bad I would be! I hope that makes sense! It's the kind of irrational thing that goes on in my mind! 

I keep having dreams where I get offered my surgery date as the NHS decide to step in and do the surgery in the private hospital just to get it done! I always dream up until the point where the receptionist checks us in. We go up to the counter and she tells us there has been a mistake and she doesn't know anything about me. It's horrible! I wake up steaming hot with butterflies in my tummy and anxiety ripping through my chest and down my arm so it feels like I am having a heart attack.

People look at me when I am out and about and assume I am so much better then I am. I always like to do my hair and make up before I go out but it does means people are deceived by how well I am.  They don't need to look far beneath the surface to see. 

For the first time ever I have been able to accept that I am indeed suffering. I am someone who suffers. I always thought that was something to be ashamed of, that I should hide it encase people said I was making it up or Dr's wouldn't believe me but really I am. At the moment I am at a time in my life and I am suffering. I guess I just have to try to wear that badge with a little honour. I am facing my suffering. It doesn't make me less of a mum or less of an anything if people take the time to understand that for me x y and z it just not possible because I am not well enough. 

It's a funny thing being sick and disabled. You would think being one or the other was enough but not for my body! Haha! People can see my disability. They cannot see my illness. That is invisible. That is the reason I started my youtube channel and my blog. To raise awareness of this disease for other men and woman and to show the world what this sick disabled woman could do. I wanted to inspire young women to believe in themselves and go out in the world knowing no matter what illness or disability they have they still will always have something to contribute to the world. 

I am sorry that in this up date I have jumped from subject to subject. I have always had a passion for writing but at the moment due to my 'brain fog' or 'mental clouding' my standard of writing has disappeared down the toilet as I have tried to write for my blog! I have 3 unfinished actually very good blog posts! Please forgive my poorer standard of writing! I will share the others with you soon. Including the story of TJ Tabitha-Jane the miscarriage we experienced 4 years after trying and 2 weeks before I first went on the crutches. We are finally ready to share that story. 


Many blessing 
Chloe