M.E. diary

Party girl to party pooper – Part 2


I’ve racked my brains about what I actually do to conserve my energy because I realised a few days ago that to get well has been almost like having a full time job for the last couple of months – making sure I have energy left for fun whilst also doing everything else that needs to be done – trying to make my illness impact on other peoples life as little as is humanly possible because I don’t want to be a burden.

Like most people who have a long term illness I don’t want anyone to have the burden of caring for me because I’m a very independent, self sufficient, proud girl and have never relied on anyone (partner, family member, friend) for anything. Then I realised that id do anything for anyone and that it made me feel good to help and wondered why id turned down help, and not asked for it, so many times when I desperately needed it. The only time I can remember asking for help was when I was 18 with a 1 year old baby and I couldn’t cope. I had been on my own with him for 6 months. I hadn’t had a night out. I had no money. I just needed a break and I asked my mother-in-law to take him for a few days. She said ‘No, you had the baby. You’re its mother. You must deal with it’. She told me many years later she really regretted it and that she realised when she got to know me better how desperate I must have been to ask.  I was a strong person so being turned down when I asked for help really hurt my pride and made me feel like an idiot. I loved her and I guess I must have vowed never to let myself feel like that or open myself up and make myself vulnerable to anyone hurting me like that ever again. Maybe I also learned that I got through that time (only just though) without any help so I knew I could survive anything life chucked at me.

Now, for the first time in my life I do feel that I have people who support me and who will help me if I ask. Primarily I’m talking about my lodger who will look out for me and offer help before I even realise I need it. He offers to take me to doctors appointments, drops me off and picks me up when I go to meet friends. I have recently stopped being defensive and accepted his help when offered because I now can’t believe I used to say ‘No thanks I’m fine!’ then get ill. Even more recently I have started asking for help when I need it instead of doing something that I know will make me ill. Something in me has changed. Probably because of how broken I was mentally and physically by the mental and physical abuse I suffered at the hands of my ex husband some barriers broke down and I now also feel able to ask friends for help. My Dad came through for me amazingly when asked a few months ago – of course he always would have but was never asked.

When my ex visited for a weekend id just do what needed to be done, take tablets to cover up pain, use adrenaline to keep going because I knew I had a couple of weeks to recover when he’d gone back. When he moved in I had to appear normal all the time – it’s not possible but living a normal day to day life with my ex had a really positive effect on my ME because its forced me to work out some new strategies  – I had to go to bed at a normal time and sleep whereas before I could let adrenaline keep me up till 3am then stay in bed, ill, the next day. It takes a LOT of planning and care to stay well and not spiked up with adrenal energy. Having a fulltime relationship helped (forced) me to sort out things that I couldn’t let slide any longer.

So, new and old strategies – the things that are getting me through my day and saving me precious energy that can be used on more fun things.

The main thing which I do automatically, and have done for a year or so, is that if I can sit I don’t stand. In the old days I hated sitting down – even eating during the day would be done on the run while I did something else – working, driving, housework, talking on the phone ….. even up to a year ago I thought only old people sat down and would exhaust myself by standing.

I don’t walk up the stairs unless I have to and I leave things on the stairs and pop them up next time i go up. I have found stairs to be one of the most exhausting things I can do and so even on a better day I’m now very aware of actions that can take energy that I can’t afford to lose and so know to minimise them and care-take my body – I am always aware that once the energy has been used up its gone and the next step is exhaustion and pain. I guess I knew it subconsciously before but it’s much more helpful to be consciously aware. It’s all about knowing these things and doing them without thinking – mindfulness – being instinctively aware of how EVERYTHING inside and outside my body is affecting me and instinctively protecting my energy and well being.

I wash up and don’t ever wipe – holding my arms up for that length of time takes too much energy especially heavy saucepans – even plates can be too much. Apparently this system is more hygienic so that’s a bonus!

Washing day – stripping a bed and turning a mattress and putting on clean sheets/pillow cases exhausts me so I try to do it in 2 or 3 moves. Take off dirty linen in the morning, wash immediately and hang out a couple of hours later. If I need to go upstairs to the loo I’ll turn the mattress if I feel up to it otherwise I do it, along with putting on clean linen, when I go to bed and fall in exhausted. Even the act of getting clean sheets out of the top of the airing cupboard and carrying them up stairs (3 floors and my room is at the top) takes a lot of energy and is too much to do straight after stripping the bed – it’s the arms above the head action again – I just can’t do it.

I haven’t ironed ANYTHING for about 4 or 5 years (and even then that was probably as a favour for someone else) – just getting out the ironing board and iron would take too much energy away from me –  even if that was already done just the standing and then lifting the iron could be tolerated for one or two items but then I’d be useless for the rest of the day. I’ve developed a washing system that means things no longer need to be ironed. Don’t set machine to spin too hard – 800 is good and 900 max. Clothes are wetter and take marginally longer to dry but they are hanging there on their own with no extra energy taken from you so it doesn’t really matter. My machine has a button for ‘reduced ironing’ which turns the drum backwards and forwards for a couple of minutes after the final spin which loosens the clothes from the drum and knocks out most of the creases. I then take the washing out of the machine and fold clothes flat and leave them for an hour (if possible) before hanging out. I peg out so that clothes hang from the top down. If you peg seams they won’t stretch out of shape or have peg marks in them if you are careful (trying to keep my elbows as close to my waist as possible – arms up in the air is totally draining) so that the hanging weight de-creases them except t-shirts which I hang by seams and fold the hem over the line so you get no crease line from the washing line (takes a lot of line room but NO IRONING yay!). The few creases that are sometimes left in t-shirts fall out after a few minutes body heat – the same for shirts and jeans anything else doesn’t seem to have creases in any more.

Showering and washing my hair – showering has to be done quickly and efficiently because standing for too long using my arms to wash takes a lot of energy. Washing my hair in the shower has to be thought about. It’s very long and thick and needs conditioning. Holding my arms up for the amount of time it takes to rinse shampoo and then conditioner out thoroughly is too much if I have a busy day or night ahead. I always plan to wash my hair the day before going out and always have a style, whether straight or permed, that looks great without any messing around (rollers, hairdryers, straighteners) as these are all things that call for my arms to be above my head.

Hoovering – I can hoover perfectly well but I can’t carry the hoover (kept on middle floor where most of the carpets are) up or down stairs. Well that’s not strictly true …. I can but because of the amount of energy it takes just walking up stairs when its combined with carrying a heavy object it’s too much and I have to then leave the hoover where it is for a couple of hours (it used to be for a day so things have really moved on) and come back to it later. I now sweep the floor boards downstairs as sweeping is fine done slowly and gently.

Dusting – the longer you leave the dust untouched the less it looks like dust – just so long as no one disturbs it 😉 but i have wet wipes that i use to dust and will do a few surfaces at a time NOT the whole house.

Bathroom – antibacterial wipes are my saviour. I spend 30 secs to a minute most days cleaning bathroom which saves it ever having to be done properly. Use one or two wipes and i usually give door and loo handle plus light pull a quick wipe over then start with shelves/windowsill then round sink and taps then loo cistern then lid and seat then the rim of the loo then flush it. Bathroom always looks sparkling clean. Shower gets a spray down when I use it and the same with the bath.

Cooking – using a tin opener and peeling veg takes a lot of energy and are the same type of action because you are using strength to hold the tin/carrot/potato with one hand and using force to open tin/hold knife/peeler and energy to keep the motion going – I find it almost impossible to peel carrots and potato’s for Sunday lunch without feeling exhausted so now I very very rarely peel potato’s we all love mash, boiled and roast potato with skins on. I can’t mash either but that’s fine coz when you do it with skins on if you quickly and roughly mash and add a dollop of Mayonnaise it’s the nicest mash I ever ate!

Watching TV – barmy as this sounds it can be quite exhausting. I find that after watching TV for 5 minutes if I don’t support my head on cushions, even though I’m relaxing, it’s too much. I guess if you are laying back with feet out and your head, neck and everything else is supported then the muscles in your body are relaxing properly but if you are trying to hold your head up everything is still braced.

Anyone with ME reading this will know the feeling of being so tired that even sitting is too much for you – you don’t know what to do with your arms, legs, head, feet so my whole aim now is to never get to that stage. It might not be possible but if I aim for never I might have fewer times when this happens.

If you have ME or another long term illness it would be great to hear from you about what you do or how you manage. Please comment below I can use all the help I can get!

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