Thursday, 19 May 2016

M.E. On: Surviving On My Own


This past week and a half has been difficult for me. My parents are away on holiday for a fortnight, leaving me and my younger sister at home. She works full-time and I generally only see her for an hour or so at night as she has her own things to do, so mostly I'm on my own. Positives first, I'm really enjoying the peace and 'freedom' that comes from being on my lonesome all day. When I first fell ill, nearly 14 years ago, both my parents worked, so for many years I was home alone. It took some adjusting when my Mum gave up her work and more when my Dad retired a few years ago. My Mum talks (or sings) non-stop (total genetic thing), so it's tiring when I have to listen or talk to her whilst trying to write something for the blog or read emails. It splits my concentration, which is already depleted and takes more time and energy to do what I'm doing (different story when she is concentrating on something, but hey ho). My Dad (sorry) is really annoying to live with and also quite deaf, so conversations are constantly repeated and voices raised and the TV is always blaring (even when he's not watching it). He goes stir-crazy if he's indoors for longer than an hour (!) and generally drives me round the twist. I've had discussions with him before about noise and bright light being an issue for me (I suffer from migraines), but he can be pretty selfish and takes the huff and says his home isn't his own, blah-di-blah, so I back down. I guess there is sometimes that feeling that I am a guest here or at least that if I were well, I'd be elsewhere. I don't like "taking over" or being demanding, but at the same time, I'm suffering and often it's unnecessary or could be helped.

Anyway, that's not really what I wanted to discuss today. The downside of them being away is I have to do a lot more for myself. Every time the phone rings or the door goes or I need to open or close a window, I have to get up. I have to make meals by myself and that's on top of what I'd usually do (and struggle with). This year, I've been eating better, so my Mum and I didn't want to ruin that while she was away. I used to survive on peanut butter on toast when they were away (no joke), which I made myself. So instead Mum was super organised and it's been plastic baggy heaven here! She's weighed out cereal for each day and bagged that, so I just have to pour it out and add milk. I'd normally have an orange afterwards, but they are too fiddly for me to open, so she got loads of mandarins as they are easier. Even although this seems pretty simple, I'm finding it is keeping me on my feet a little longer than I'm accustomed to, which causes instant excruciating back pain and my joints are more sore than usual. I normally get lunch by myself, so that's been the same. For evening meals, Mum cooked and froze individual portions of mince and tatties, which I can microwave. She's been making homemade burgers and chips, which she knows are my favourite, but the burgers weren't suitable for leaving for me, so instead she prepared the chips and again they are in bags in the freezer. I've been having them with fish fingers, so put the whole lot in the oven and I can leave them for half an hour without having to be on my feet and watch over them. I'd have baked beans with that (well actually I'd normally have vegetables like carrots and peas), but that can be tricky because I'd need to stand and stir those in a pot on the hob. Instead my sister got the microwavable beans in the little plastic tubs, so they just take a minute. I eat a lot of fruit, so my sister has been preparing/washing grapes and leaving those for me and I've kinda been seeing to the other stuff myself. It's a lot to remember though and I'm finding hot meals are usually cold by the time I get them served up. It's also a little mundane eating the same thing every second day, but for 2 weeks, I can survive.
I've heard a lot of ME sufferers complain of "brain fog" and for the most part, I feel like I'm pretty sharp, but during the last couple of years, I've noticed I really struggle to retain information or can completely forget a word or name for days (sometimes even weeks). To add to it, we have a new cooker and microwave, which I didn't know how to use, so I had to write myself instructions for all of this. I felt like a divvy saying "take out of freezer in morning, close lid, push up vent, press start" etc, but I get so frustrated and angry actually, if I can't remember something, so it's like a safety net and stops me getting in a panic. Into the 2nd week and I don't even look at the list, so I've learnt something! I have had a couple of cooking mishaps. The first day, I took the mince out to defrost and went to lift the vent in the lid. The tub was one of these expanding ones and unfortunately the bottom of the vent had frozen to the inside base of the tub, through the food, when it was compacted. I tried with all my strength to get the lid off and then free the vent, but it was so badly stuck the lid wouldn't budge. I almost pulled the stopper all the way through the hole in the lid, trying so hard! Eventually I freed it and was left with a 3 pronged frozen hole in the centre of my mince and tatties! Another day, I was giving it a stir as it was looking a bit liquidy and I don't know what happened, but the expanding bit collapsed, then sprung back up and splattered me with goop! It was on my face, my jammies, in my hair, my glasses and it wasn't until later that night, my sister noticed it had splashed all over the adjacent wall. In the newly painted kitchen. Have you ever tried to get greasy food stains off a painted wall without removing the paint? It's a mess, I'm going to have to 'fess up when the parents come home and hope they have some spare paint that'll cover it. Bollocks.
Other than meals and making cups of tea, it's like I say, constant getting up and down to get things. I usually try and combine going to the toilet with a trip to the kitchen to take pills (separately, I don't pee on the kitchen floor), but you still find yourself getting up again and again or forgetting to bring something through. We had lots of deliveries last week, several by different companies in the same day, so that involved a lot of trips back and forth. I was really shattered last Tuesday and I saw DPD parked outside and knew it was for me, but when I went to the door his screen froze (that I sign) and he had to re-boot the whole thing. I had to stand there for several minutes while he started it back up again, but I could hardly shut the door in his face and ask him to come back in 5 minutes (and that would've been just as much of a strain on me anyway). That type of situation I find really challenging and awkward, because the illness is invisible, nobody can see anything wrong with me and to be truthful I don't want to or feel I should have to explain it to a complete stranger, who only came to deliver a parcel! I've never found a way around that in all these years and doubt I ever will. It meant, I collapsed in the chair after he'd gone and couldn't get my lunch for another hour, so was very hungry! The phone sits near me, but I still have to get up to see who is calling (I have so much crap (well crap I need) balanced on the arm of my chair, I can't have a phone perched on top of that). I usually ignore it (it's rarely for me), then they leave a message and I have to see to that at some point anyway! I've been wakening earlier (fear of sleeping in when there's nobody to get me up) and going to bed later, so neither of those are good for me (not that sleep particularly helps, but little sleep certainly doesn't). I had a wee cry after my shower last week, which was probably my lowest point. It was pure frustration and exhaustion, because I was so shattered from doing other things and used up every last ounce of energy to shower, that I couldn't lift my arms or move my body to dry or dress myself. Cleaning, hoovering, dishes and laundry are not things I'd normally be capable of, but my sister has had to take that on (she usually just sees to herself), so I am hesitant to ask her for anything else, especially as she's told me I'm using too many dishes and can I pick 'easy' fruit to eat because she buys pre-made packs for herself, so she doesn't have to cut and wash them, so doesn't want to do it for me! She's half joking, but really it's not fair to have her run around after me, when she's got enough to do and has been working all day.
So that's been my week. I was knackered at the start, though kinda got accustomed to it, but since Friday, it's really been catching up with me and I've been stressing more about failing to finish things or struggling to keep up, which resulted in sleeping in and generally having a bad day on Tuesday and I have no idea where yesterday disappeared to either. Roll on next Tuesday, though I'm sure after 15 minutes with my parents, I'll be wishing they were back on holiday!  As always, if you have any comments or anything you'd like to see me discuss in these segments, you can write below x

M.E. On are a continuing series of posts aimed at raising awareness of and detailing what it's like living with chronic illness (Myalgic Encephalomyelitis/M.E. or Chronic Fatigue Syndrome/CFS) through discussion of a variety of topics.  I was diagnosed in 2002 after contracting glandular fever earlier that year.  Unless otherwise stated, all opinions and experiences are my own.  If there's a specific topic you would like me to cover or you have any questions, please comment below and I'll do my best to address those in future blog posts.    

7 comments :

  1. I'm exhausted just reading about your exhaustion throughout these tasks-that shows you are a very good writer to convey that so well. This really is a great series. Oh dear, re the tatties and mince on the wall. I did something similar recently!!!Xx

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    1. Thank you. I got rumbled with the food explosion, my Mum was very understanding though!

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  2. Big hugs. Thanks for writing this to draw attention to ME. I remember one of my lowest ebbs (when I was still working) when I didn't have the energy left to wash my hair in the shower after washing my body. I just leaned against the wall and sobbed. No one could dream of the silly little things you can no longer do when you've got it. Wishing you lots of spoons to get through the next few days. xx

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    1. I can totally relate to that, it's usually the 'silliest' of things that then upset you.

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  3. I encourage you to get a gene mapping to see if you have a CBS mutation. All of the foods that you have mentioned and posted in your post are things that will cause bad pain in a person with a CBS mutation (eg, they are all pretty high in sulfur, phosphorus, calcium and MSG).
    If you get a gene mapping and find that you have a CBS mutation, you can modify your diet to things that will be better for you and you will feel better.

    If you do not have a CBS mutation, then at least you can cross that off the list and look for something else.

    But if you do have a CBS mutation (and it is high in Scotch Irish blood/ my family is primarily Scotch Irish), I am not surprised that you are in pain seeing the foods you are eating. I love all those foods myself, but I have stopped eating them and my pain has gone away.

    So I really encourage you to go to 23andme dot com or some other gene mapping service and get your genes mapped.

    Also start supplementing with CALM magnesium citrate powder or Trace Minerals Research "Mega Mag" liquid ionic magnesium chloride. These are the two of the best absorbed magnesium supplements; and magnesium helps calm nerves and lessen muscle spasming and help lessen headaches.

    And for joint and muscle pain, you could get Ancient Minerals topical magnesium oil (use on skin only/ do not eat :). This magnesium oil really works to get rid of joint and muscle pain.

    Another thing that can really cause pain is MSG, and so avoid foods with MSG and MSG products like (autolyzed yeast extract, hydrolyzed soy protein, yeast extract, "natural flavorings" etc. They are all MSG. The names are a way of trying to trick the consumer, but if you are a person who is msg sensitive like myself, you will know because these chemicals always cause headaches and pain in sensitive people)

    A gene mapping will tell you specifically what foods are best for you and which ones you should avoid. For example: even healthy foods like fish and broccoli are bad for people with CBS mutations and can cause pain, so it is best to at least be able to get checked and cross that off your list of possible aggravations. You could be eating what you think is healthy like I was and find out that the food is actually bad for you given your unique genes.

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    1. I've never shown any food intolerance symptoms before really. It's down to the ME causing pain and the fact I'm having to do more around the house that's causing the extra fatigue on top of what I'd usually feel.

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  4. I have lupus, and sulfur foods cause problems, too.

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