Christmas holidays are making me realise how much I can’t do

So, we are day 2 of the christmas holidays… and it is making me realise how much I can’t do…

I have spent the last few months plodding through my days. I have worked out a little routine that I can tweak a bit, but generally I can cope with it. My symptoms vary day to day, but are usually bearable… until the Christmas holidays arrive, with the over excited, overtired and very sensitive children. I suspect this is a time where a lot of mums struggle. Kids show up the cracks in mental or physical health if you hang out with them long enough!

So my normal day starts with a crazy couple of hours packing my two boys off to school. Then I will do a few chosen jobs, do one bit of gentle timed exercise and rest, BY MYSELF, usually for three hours or so. I go off to collect the kids, and if I have played my cards right, and rested enough, then I will have enough patience and energy to get them into bed. (if not it gets messy…)

So now the holidays have arrived, the morning starts with that lovely feeling of not having to get them off to school, I even danced this morning (some cheesy Christmas number inspired me), we went for a walk together… then I started to feel worse. Managed to get lunch and we all lay down to watch a movie (note, not on my own!). Got up, world spinny, went and picked up a takeaway as a huge treat. Nearly cried watching them eat it (or not eat it) because I wanted to share the experience with them… and had to lie down. When I got up an hour later to nit comb my eldest (slowly, conditioner.. not pressing too hard!), the world was even more spinny. Spinnier than it has been for quite a few weeks. Bells start ringing (warning ones, not Christmas ones sadly – sorry, couldn’t resist!).

Initially confused, the pieces have started falling into place. I have been doing too much for the last two days. I am still too sick to get away with it. I need to do less.

At this time of year, while surrounded with people and food (lucky me), it makes me realise how much a can’t do. The food is one thing – not eating what everyone else is eating can make it feel like you are living in a parallel universe and it can be exhausting to be enthusiastic about yours and every body else’s food. This is a sociable time when I will have to do this a lot with people of varying levels of understanding and acceptance. I have done this for the last few years. What is going to be new is to have to take myself away from the festivities. Actually MISS OUT on what is going on. Miss out on watching my kids enjoying Christmas… Mind you, Christmas is just another day, and I imagine some parents would be delighted to have to skulk away and watch a couple of hours of TV, meditate or read a book… Maybe I should try and think of it like that.

What I have been doing to look after myself over the last few days isn’t enough. If I carry on like this I will get worse and I can’t bear that. But, I have managed the two days I had to look after the kids on my own. It scares me so much that I couldn’t sustain it for much longer than that. From now on I have my husband and larger family around until they go back to school. (lucky me again).

It is hard managing my condition while seeing it through other people’s eyes. They don’t see how I feel, and if I get it right then there is nothing majorly disabling to be seen at all. So they have to take my word for it; that I need to rest, that I can’t jump up to help, that I really am allergic to all but 22 foods.. and lots of other things too. Would I believe me if i didn’t have chronic illness? I bloody hope so. I would if I had it all explained to me. So maybe that is what this blog is about – explaining the behind the scenes working so that I won’t feel so judged. So that I can look after myself and rest without guilt or excessive apology or explanation.


I didn’t feel sick for three whole days…

I am in the middle of (well, hopefully past the middle, but could equally be right at the very start of) an evil flare up that has so far lost me my main job (which I loved). It has caused untold stress on my husband (VERY hard to watch) and has changed my view of the world and what I can do in it….

BUT I had three days of feeling not sick. My POTS was still having fun, so the dizziness was hanging around and still meant I had to keep lying down, but the nausea went. For three whole days. It was glorious. I was able to look up at the pretty autumn colours and feel the refreshing nip in the air… all automatically. No need for mindfulness and appreciation training. It just happened. I loved it.

It also made me realise just how sick I have been feeling. I had forgotten what it was like to feel well. I rate my nausea from 0-10 every day in my (awesome) food diary (squared paper and everything), and I had been having the occasional few hours of what I thought was zero. It wasn’t zero.

So during my three days of joy, the rational part of my brain said, “this may not last. Enjoy every moment because you don’t know when it will go again”. And I did. The other part of my brain.(dark, twisted) looked at my 4lb weight gain and thought NO. I will not be constrained to 23 foods (liquidised currently) and become fat  “you haven’t been doing enough exercise.. now you are better you can do more exercise, 20 mins a day? No wonder you are getting fat, lets double it…. and while you’re at it, I reckon you could do a bit more work, you’ve hardly been managing any of that recently which is a bit pathetic”… and that part of my brain drove me to up my exercise to twice a day. (calmly, mindfully, but still a big jump from what I was doing, like I said, pacing doesn’t come naturally to me). It also plopped me in front of my desk to do some of the drabs of work that have been hanging over me for the last 3 1/2 months…. AND I FINALLY put our duvets into vacuum bags AND vacuumed them in there (so satisfying, really)… (but did involve lugging the hoover up two flights of stairs with the world spinning, and huffing and puffing my way through folding, stuffing etc with clouds of feathers and dust….).

I don’t know if it is due to these antics (I did still spend a fair amount of time horizontal) or just a natural cycle, but the nausea hit me again yesterday at 11 am and hasn’t let up since… here we go again. Now both parts of my brain are in agreement and whizz through the theories: “was it your fault?” “you are so stupid, you fell into that really predictable trap”.. “or… is it the apples? you didn’t eat so many apples when you felt well, and you did have one yesterday… or the new hemp seeds? maybe they have traces of gluten in them, but chose not to mark it on the packet (that is a real thing – companies don’t have to declare possible gluten contamination on their packets).. No… I bet it was too much fibre in the snack at 10, the timing fits with that, but it shouldn’t last so long, but your mast cells are a bit OTT at the moment…”. It goes on, I will save you from more.this always happens with mast cell disease. The triggers are so varied, the symptoms are so hard to unpick and there are so many of them that most drs think you are mental (literally) if you reveal too many in one go.

So who knows what caused me to flare up AGAIN, but there is one silver lining. I carried on taking my new midodrine pills every other day through that ‘well’ period, so it can’t be them sustaining my flare up (as per a pre well spell theory). They are my ‘never put all your hopes into one pill, all my hopes on one pill’ pill. They definitely help with the dizziness and brain fog, so I feel more confident to carry on with them and long-term that is a really good thing.

For now, I keep weeping… Whenever I get a spare moment (head in the fridge getting kids milk out for example). I just feel so sad that I feel so sick all the time. The well spell was lovely, but it has shown me how sick I feel at other times, how hard it is to see the bright lightness, joy and fun in life. What a struggle it is to do things that other people take for granted…

BUT I am seeing two amazingly wonderful friends this weekend who can’t wait to chill out on the sofa with me for the majority of the day and watch TV/chat about nothing. Lucky me.