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Last week I had to move out of our house while two rooms were plastered. To stay would have meant being shut in one room with my partner (who would be trying to work from home and deal with the workmen) and the dog from 8am all day for at least three days. That would mean no bed (the sofa is not actually comfy to lie on for any length of time) and i cannot last a day without lying down, usually twice with at least an hour’s proper sleep… and that is when i have not woken up til about 10am, never mind before 8. Add to that the mess, noise and dust and you can imagine how relaxed that would be. It was not going to work. So i abandoned ship which helped my partner who then had one less thing to worry about/deal with.

A good friend of mine agreed to take me in and i went to stay with her. I took a big batch of veggie stew and microwave rice, microwave porridge, various snack foods etc so that i would not have to depend on her (she would be out at work all day and then busy with her baby anyway, so did not need to be looking after me too). I ended up staying from Sunday evening until Thursday afternoon and i really enjoyed the change of scenery.

I was mostly on my own and apart from the Monday just used my energy and time resting, having baths (daily due to itching issues, that will be another blog post, (maybe) coming soon!), making food etc. It was nice not to be at home where there are always more things to do. I felt more relaxed i think as I could not get caught up in little household chores or other stuff that tends to creep into a day at home. I was barely on the computer (i did not take mine) and watched no TV (there wasn’t one). It was nice and quiet.

The Monday I actually went into town and to THREE shops (and a cafe for a rest mid-way). Yes, what was i thinking? I rested in bed before and after the trip and expected it to be a bit traumatic, but actually it was a pretty good experience. It was something i had been really wanting to do for months but not feeling able. I really could have done with someone to help me carry my purchases as my arms/neck/shoulders get very tired carrying the smallest thing for any time and it was a struggle at times, but as i was very careful in the days before and afterwards i did not suffer too much for my exertion, just extra aches and pains really. I sat down when i could and asked for help as much as possible in the shops and people were very helpful. The great thing was actually being able to go and buy some undies for myself. There are a lot of things that are ok to have someone else buy for you, or to buy online, but clothes are tricky. I really wanted to go and choose my own vest tops and knickers, especially as my skin is so sensitive and itchy i wanted to feel them and see how scratchy/bulky the seams were, and so on.

I also bought a pair of jeans! They are not a perfect fit so i will need a belt with them (my hip to waist ratio is a little ridiculous so this is expected) but i am so pleased to have found some as who knows when i will next be able to go clothes shopping and my existing ones seem to be getting a bit thin in places (you only really need one pair of jeans when you live in PJs, but it is so distressing when your jeans rip and you have no replacement at the ready).

I really think it is about my third visit to a clothes shop this year, i cannot actually remember the last time so it may be even less. It has certainly been a while and it was nice to be out and about, “gal about town”, watching and seeing how life goes on usually without me seeing it. A lot had changed in the two streets i always go to and my memory of where things were was a bit wrong! I still feel like a visitor in this city after 8 or more years of living here. The last time i made it into town was the August Bank Holiday when i went to the art gallery, which was a great day and i am still remembering it fondly!

My friend lives nearer town than i do so it was really easy to get in and out and also she lives near some local shops so i went out briefly for some fresh air on other days and sat on a bench, went to a cafe and a shop as well and it was so much less effort to have it all right on the doorstep. It made me think about what things might be important in choosing where to live if we move house. It is interesting to try out other people’s houses!

Unfortunately on the Thursday afternoon once i got home i felt surprisingly ill and thought maybe i had overdone it more than i thought, so i spent the afternoon in bed. I got up for the evening but kept having bad dizzy spells even when just sitting quietly which is rare now that i am on medication for my POTS. I felt pretty bad but thought it was just the usual payback. I went to bed and slept a bit before waking up and feeling queasy. At 2.30am i started to be sick and this continued until there was nothing left in me at about 5am. There were breaks in between bouts but i felt so bad that i could barely move or lie down as i felt as if i could be imminently sick at all times. It was not a fun night. I eventually got a couple of hours sleep at about 8am but barely ate on friday (even drinking water was hard) and still had little appetite all weekend, though i gradually built up the amounts i ate and no longer felt that i would be sick.

During that night i was obviously up and down to the bathroom and think i was having POTS symptoms as well. My heart was beating very fast and my arms and legs kept getting pins and needles. The next day i did not take my POTS medication until i had eaten something. I really did not want to put anything in my stomach in case it triggered more sickness. So on top of the weakness and dizziness of being so ill i also had POTS symptoms, all in all it was BAD. I should have taken my blood pressure just to see how bad it was, but was too ill to think about that until later!

So that’s what you get for going out into the world… exposure to viruses! I kind of expected it, i just hope it does not knock me back for too long. From experience this year these things seem to really take their toll long-term. I hope to have some energy by Christmas, if only to digest some seasonal foods! At least i have lost a few pounds through all this, so i don’t have to worry about eating myself out of my new jeans 😉

It is now Tuesday and i do feel much more back to my “normal”, if not very lively. I am still a bit achy (being sick uses a lot more muscles than you would think!) but pleased it only lasted as long as it did. After being away from home, then out of action i do feel i have various things to catch up on, not least the blogging i put off last week to save energy for my trip away from home! Ahh well, hardly that important… you may get some old news at some point!

…but so little energy that i cannot manage any of it.

People, we have a back log!

I read a post by my friend today where she says she wants to pretend to be normal for a few hours, and it got me thinking. She says:

“But also I’ve been feeling this week like I just want one day, or even half a day, where I just get to be normal. Or pretend to be normal.”

Hell yes! I know what you mean. In fact last Friday after three weeks of planning, worrying and not feeling well enough, pacing the whole week before, watching the day itself grind so slowly along while trying not to use up any energy and rest as much as possible; I went out!

I just wanted so much to have an evening of doing something normal, feeling normal (or at least not really ill), having some much-needed fun and by and large i did. I had the best indian meal i think i have ever had and spent time with a great friend. It goes without saying that this was a rare occasion for me (but i will say it anyway) and that i have suffered the consequences since (but it was worth it).

I got dressed up (as much as my limited wardrobe of non-pyjama items allowed). I put on makeup for the first time in ages which felt very odd and like i was pretending to be someone else by hiding my pallor and ill-worn face: yes, pretending to be a well person. I sniffed it warily (it goes off and smelly you know when you only use it once a year) and i was feeling very out of practice.

I also had a big dilemma about whether to take my walking stick…

I quite often have this dilemma about my walking stick. Without it i can pass as “normal”, as able-bodied, though that illusion can soon dissolve and i need to explain myself anyway. If i am going somewhere by taxi and it is door-to-door with no walking or needing to stand and wait outside, and if i am not going to be alone, i will sometimes leave it at home.

Quite often when i don’t take it i find myself in a situation i did not expect and wish i had it with me, though it is rarely a major issue as it is not really a whole lot of help to me if i feel really bad. It has a seat at the top and this can temporarily help me if i have to stand still. Mostly it is a useful signifier to others that there is something wrong with me. People will be more accommodating if i ask for help or make a request to be dropped right outside my house, they will help me with my bag etc. It makes life easier and gives people warning that i cannot walk as fast or as far as they would otherwise assume.

It is nice to feel that i am escaping my ill life for a couple of hours, that i do not stand out from the crowd as a young (ish) person with a walking stick. It is nice not to attract questions and have to explain what is wrong with me to all and sundry and then have to use energy to deal with their reactions and questions. But should i “pass” in this way? In a way i feel that it is only passing due to the assumptions of people i meet that i am able-bodied and healthy, so really the problem lies with them doesn’t it? But i cannot help but feel it is important to make visible that not everyone who is young (ish) and looks healthy really is. It feels like pretending and hiding to deny my disability by not having my stick, even though it is almost useless in a practical sense!

I wonder if this feeling comes partly from my experience as a lesbian – another situation where it can be easier to pass/pretend and rely on other people’s assumptions that everyone is straight. I make a point of correcting people when they assume i am straight (unless i feel threatened, and even then i feel guilty for not challenging them). I cannot divorce my personal actions and identity from their political impact, small as that may be when i am hardly a visible part of society 99.99% of the time. Am i using an unfair priviledge to be able to pass as straight, able-bodied etc?

Should i want to be “normal”? Should i have got over that by now and embraced my disabled identity? Well i would say in many ways i have, but being chronically ill 24/7 with no break is not something that can be embraced and loved at all times – so why do i feel a traitor to the cause? I actually do not even hope to be “normal” again or 100% well (i cannot dare to hope that far, and it seems such a no-no to even speak of it within the disabled community – but hey i am used to not fitting into the club) but a break from it all and to try on a different identity that is more a choice would be nice occasionally… is that wrong?

Am i the only one who even thinks about this stuff?

ME/CFS Awareness

ME/CFS Awareness


November 2009