Alice's top 10 things that can make surviving severe M.E. a little bit easier!

Hi guys, this is a fairly picture heavy post, but I wanted to share with you some of the aids I find helpful living with severe M.E. Not all of these will be relevant or helpful to all of you, but I'm hoping there will be something here for all of you.

A whiteboard can be really useful if you need to communicate with someone but do not have the energy to speak, for example carers or family members. Of course, you have to be able to write and for some this is harder, but if you find speaking an issue then a whiteboard is great. Plus they can be fun for simple games such as tic tac toe and hangman.

Many people with M.E. suffer with insufficient temperature regulation, I certainly do; having a high fever at night or feeling too cold but still sweaty. I find if you can cope with the noise from a fan, it can be really helpful to keep you cool, and to keep the air moving around the room. Wearing thin layers of clothing can help too, as you can easily add or subtract layers to keep yourself comfortable.

The only problem I have with the 'grabby stick' or 'easy reacher' is that I often don't have the grip in my hands to operate it. However, if you still have fairly good hands but can't sit up to reach something, then it's really useful.

If you're bed-bound like me, a commode is essential. Some of you may need to use the bedpan, but for those of you who can transfer with help and sit up for a few minutes the commode will be very useful. One with wheels can be useful too especially if you don't have a wheelchair to use indoors. You can ask you occupational therapist and they should provide one for you.

This is something else that the occupational therapist can provide for you if you are predominantly bed bound, and they also do seat cushions if you're in a chair for a lot of the day. They stop you getting sores on your pressure areas, though it's still important to move every so often if you're able, or ask your carers to roll you over.

So I usually use my hydrant (like a bottle with a long tube and a valve on which syphons liquid through thus illiminating the need to suck) but if you can't lift a cup and you're looking for a cheaper alternative, I recommend using straws. However, if you struggle to suck, as I sometimes do, you may ask a carer to spoon liquid into your mouth, though this takes some getting used to.

My eye-mask and sunglasses are two of my best friends! For those of you who are light sensitive, and those of you with insomnia, these are indispensable!

Or ear plugs if you can't handle the pressure of something on your head, or you're not as sensitive. I tend to use mine if there's any building work or lawnmowers going on, or if I'm having a bad sensitivity day.

Hot water bottles are really good for easing pain, particularly stomach cramps and back pain. However they can be dangerous, as they are filled with hot water, so wheat bags you microwave are sometimes more useful, though I cannot handle the smell of these.

Good family and friends make all the difference, as well as supportive carers, and decent medical health professionals. Many of us with M.E. can lose relationships through this illness; lack of communication, disbelief, frustration and such, but keep hold of the friends that stick by you through everything, they are treasures.

I hope this has helped a little, and given you some ideas you may not have had in the past. Tomorrow is M.E. awareness day and I'll be writing a special post as well as uploading a video to my YouTube account: Thoughts From Alice which I'll include in tomorrow's post.

Love you,
Alice xxxx

© Alice Daley 2013