17/05/2015

MEAM: MEAW: My Life.

For those who don't know, for M.E. awareness month (May) I am writing a post, despite my severe illness, every single day. I'm doing this to raise money and awareness for the neurological chronic illness M.E. and the charity Invest In M.E.in the hope that one day we may find a cure. So, I'd really love if you'd head over to my JustGiving page and sponsor me throughout this challenge. Thank you.

I don't really talk about my daily life, what a struggle it is and what I actually manage to do. It scares me, terrifies me that my M.E. seems to be progressive, 6 years and never getting better takes it's toll on someone. But, I hope and hope that I will survive this, that it won't kill me, that I won't be another statistic. So, I keep smiling, keep working, keep going. And, I thank Michael for that, his persistent optimism and  Unfortunately, i don't have good and bad days anymore, they're all the same or they get worse as time goes on. So, here's a look at my day.

My Life.
I never have a set 'wake-up' time anymore but it usually varies between 5 and 8. Either way, i still feel knackered. Then, i wake Michael up, but this can take a while, he's a deep sleeper, and i'm not loud enough or strong enough to get it first go! We usually cuddle for a bit but this can be difficult because of all the pain and sensivity covering my body. Michael then helps me onto my commode (i use this all the time now) for my first toilet of the day, and sorts the bed out to make it as comfy (comfy? does that even exist any more) as possible. I then need breakfast, i try to eat as much as possible for the first meal of the day as it's the easiest time for me to eat and if i try to eat more for breakfast the other meals aren't as hard. My favourite breakfast is Michael's microwave crumble, it's soft, full of fruit and good energy. After breakfast I have to take a laxative, I have to take a lot throughout the day as my bowels don't work great and I don't think they have the energy to work anyway! But, lately these give me a tummy ache (more than normal) and make me uncomfortable so every meal is incredibly tiring.

Throughout the day i will have trouble speaking, forget when i'm halfway through a sentence and i can't remember what things are called but luckily Michael speaks fluent M.E. Laura! Then it's time to take my medication (dihydrocodeine & a concoction of vitamins), I hold my cup and straw and Michael pops the drugs in my mouth as I just can't pick them up, so frustrating! Michael brushes my teeth with my baby toothbrush (I still have a baby tooth and the others are sensitive) and if I'm lucky, we can use the electric one. I get changed every other day, it's very tiring and Michael has to do all of it for me.

Whilst Michael's pottering around, i check my emails and read a few blogs. In MEAM i try to write a little bit of a post on the tablet we bought for it's lightness but some days it just ain't gunna happen. Once a week Michael has to change the bed: he has to take me into our huge, comfy, bad-ass sofa, however this week my pulse hit the roof and my whole torso was covered in sharp stabbing pains. Now it's time to lay down. Due to childhood trauma and worries bolbbling around my head i find it very hard to do 'proper' no-stimulation resting (i do it for 10 minutes at a time and am trying to gradually build it up) so i lay with my eye mask on and listen to my audiobook. I lay like this until lunch, usually with Izzy cuddled up with me like the picture above for heat on my hurting stomach. Michael will have to keep help turning me as, because of my weight, i am very susceptble to bed sores. I may need to use the toilet at some point too, this is so tiring and often makes my stomach pain flare.

Then it's lunch, i usually think about this the night before, along with breakfast, so i don't have to stress. I love salads but most of the time there's too much chewing involved! Michael usually makes me one dinner recipe a week which i'll usually have a bit of, or he's frozen something that he can just heat up, and when he cooks he'll chop everything up small so it's easier to eat it myself. I have to sit up (or should i say propped against pillows) again but not for long. But, what happens when you hurt too much propped up but if you lay down too quick you get incredible trapped wind? We watch an episode of one of our favourite series with lunch, it's the time when me and Michael get a second where i'm more awake and he's not busy. After we've finished, he'll move me a little lower and i'll stay like that until my body can handle laying down. While i'm sat there i'll maybe tweet or instagram but i'm a bit all over the place with social media!

Izzy will bring me her ball, bless her, so i'll roll it a few times but i ca't manage anymore. I'll start listening to audible again then, when Michael's finished cleaning the kitchen, he'll lay me down and come in for a cuddle. By this point, i can't keep my eyes open and i'm in so much pain and very senstiive to the tiniest of things. Eg. Michael loves to sing all the time, which i love!, but i have to ask him to stop because my mind boggles. I hate that. I stay like that until dinner time. Dinner is usually a smoothie, i can drink this pretty much led down which helps me a lot. If i have anything else instead, Michael will have to feed me. Sometimes, i watch a YouTube video with my dinner but mostly i just carry on listening. Though, i will check my phone and maybe message my best friend or do something on social media. I'm having trouble with that and keeping up with MEAM but i manage. Now, i take some more pain medication and Amitriptyline (for pain and sleep, i don't need anti-depressants). Again, Michael has to feed them to me as they're just too hard to pick up.

Now, starts my bedtime routine, though it hasn't been working lately so i just get more and more tired everyday and i hate bedtime because of the hassle. This is when i'll try to do some physio and tensing exercises depending on the pain, and Michael will have to help me do streches. Obviously i'll need to use the toilet before bed but this is so difficult and (as all day every day) it takes me a while to go and it really hurts. Michael will put my sleep/neck pillow on the bed for me, then help me get comfy and onto my side. Then, we get Izzy on the bed like in the photo above, as she sleeps there and like that as it helps me. I'll listen until bed time, maybe resting and doing nothing for 5 minutes here and there. I cuddle up with Izzy and try to go to sleep with Michael stroking my back. This can take anywehere between 30 minutes-7hours to get to sleep. I wake up throughout the night, have vivd nightmares and the pain makes me restless so i never sleep solidly and all this on top of non-restorative sleep does not make for a good night and i never ever wake up feeling any better.

So, there you go. I'm always worried of what everyone thinks of me, that you all think she's not pacing/resting right or 'well she's blogging everyday'... But, I want you all to understand what it's like, you only see a tiny bit on here and you'll all have noticed I've been mia for months. That's because of how ill I've become. So ill that I end up going weeks and weeks without even speaking to my Mum or Nan. And, I'm doing M.E. awareness month because of this. I want there to be more representation of us with severe M.E. who can't leave their beds, I don't think people outside of the community see this extreme side of things. I've been planning this since Christmas so I've been stock piling little bits of writing here and there. I guess I just want people to understand how hard this month is for me, for someone in this situation, in the hope that you'll donate on my JustGiving page and give a gal a hand.

7 comments:

  1. It breaks my heart to hear how difficult things are on a daily basis for you Laura. I know how challenging this month will be for you and I think you're an absolute superstar for giving a voice to so many others who aren't able to speak up about just how severe and debilitating ME can be xxx

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  2. I have been reading your posts, but I hadn't realised life was quite so tough for you. Thank you for sharing so honestly. xx Sending love, and spoons. xx

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  3. My heart goes out to you. I got ME at age 35 and was bed bound for years. I learned of supplements to heal my immune system, food to help, deep breathing to help with pain and fatigue, etc. It wasn't easy and has taken years. I'm no longer bed bound but do have to rest a lot. There is no cure but with the right help, sometimes we can find a better quality of life. I do a lot of writing and have a support group. If you're interested, you can contact me on FB. Our group is the best of people and lots of info. Here is my group link and the link to my latest article
    Know that I understand and I care. Sending blessings. Clarissa Shepherd
    https://www.facebook.com/groups/Fellow.Travelers/

    http://www.prohealth.com/library/showArticle.cfm?libid=20171&site=articles
    Heroes Amidst the Daily Grind of Chronic Illness

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  4. Thank you for sharing - like you, I contend with ME (tho in the US it is still known as CFS). Sending gentle, encouraging hugs. hugs, de {Creative Smiles}

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  5. An excellent blog and so many things that are true for me also - like being comfy, it's been so many years that I've forgotten what actually being comfy feels like! I'm pretty useless at no stimulation resting, there's so much going on in my head trying to stay still, relax or meditate makes me more stressed! xxx

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  6. If you don't mind I'm going to print this out for my doctor, I don't think she (or many doctors) seem to realise what M.E. can be like for the bedridden & severely affected. It is so important for people to know what severe M.E. is really like & you are so strong & brave to be that voice. I can't even imagine how exhausted this must month be making you.
    *Huge, very gentle hugs*

    Sally xx

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