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.

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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.

Clinging to my diagnoses

I feel an almost desperate clinginess to my diagnoses.

Why?

They were hard won – lots of home research, tracking down of doctors.. months of analysis of my symptoms.. but also because they are validation of what I am going through.. Because my illness is invisible, no one can see how I am struggling or suffering. In fact most people I meet tell me I look so well (bit of weight loss and a big smile seems to elicit that response). So here is a breakdown:

A Fraudulent member of the Ehler-Danlos family.

EDS is also known as joint hyper mobility syndrome. I’d always known I was bendy..in fact I was known for it…splits both way at school with no warm up or practise (Awesome!). In my 20’s a pub trick was straightening my elbow too far and wiggling it (hilarious after a few pints). When I found out that EDS was the root of all my problems a good friend said ‘not so cool now’.. spot on!

Fraudulent because most people with EDS suffer with intense chronic pain and joint dislocations. I am so lucky because I don’t get this. I get the odd niggle, particularly if I don’t look after my joints, and I have two hernias… but that is it… maybe that is why my body feels it needs to go full on with the mast cell issue…

EDS affects the connective tissue, which is where the mast cells live. Which brings me on to my main nemesis:

Mast Cell Activation Disorder. A really rare condition linked with EDS. Mast cells are the allergy cells. When they detect a danger, they explode, their contents being released into my body. One of which is histamine. (Mention this to anyone and they say, ‘yes, I have hay fever too…’)

My mast cells are very paranoid and see pretty much anything as a trigger:

Food: I can only eat 23 foods (up from 15)

Temperature: I can’t get too hot (I am literally allergic to summer) or too cold (wtf)

Exercise: If I do anything above a gentle intensity I have a reaction.

Tiredness: (hilarious because too much histamine stop you sleeping)

Stress: someone described a study where mast cells popped like popcorn when the person was under stress..

Pollen or any other allergens.. the list goes on.

When they a triggered I feel sick, dizzy, tired, brain foggy.. if this carries on, I stop absorbing my food and start to lose weight with scary speed. I can also have the feeling that my throat is going to close. It has only actually happened once, but the feeling is intensely uncomfortable and scary… it also earned me two epipens. Lots of people with MCAD have anaphylactic reactions, I am lucky that i haven’t so far, but i seem to be edging closer each time I have a big reaction.

Lastly POTS. (yes, like deliciously Ella)

Postural Orthostatic Tachycardia Syndrome. Again, I own this diagnosis slightly fraudulently: When i was tested a couple of years ago, I was much improved and I came up as ‘POTSy’; having some signs, but not fulfilling the criteria for an official diagnosis. I was OK with this and declined the midodrine trial at the time… ERROR!!! My current flare up (bad one…cant work) has featured many POTS symptoms. I was asked to do some home testing of my blood pressure and heart rate at home. This showed two things. One my blood pressure goes scarily low (78/48…not good) and that when I am feeling bad I have a raise of heart rate of over 30 when I go from lying to standing, and this is sustained for more than 10 minutes. In fact it gets worse the longer I stand still…

So now I am trying midodrine… Because of my crazy mast cells I have to start this off very slowly: Normal dose is one tablet 3x a day. I am starting on one every other day… and I think my body is reacting to it..

So my body really needs this drug.. but it is reacting to it. Meanwhile my function is deteriorating… I am losing my main job and I can’t look after my kids for a whole day on my own.. scary times… but I mustn’t get stressed, my mast cells won’t like it (!!!)

#mastcellactivationdisorder #mcad #mastcellactivationsyndrome #mcad #posturalorthostatictachycardiasyndrome #POTS #eds #ehlerdanlossyndrome #chronicfatigue #chronicillness #invisibleillness #spoonie #zebra #clingingtodiagnoses #gottolaugh #longtermcondition

My Fatigue is empowering my children: a silver lining

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So, all through the trials of having a chronic illness, I think it is really important (sometime REALLY hard) to look for the silver linings.. some are so small they are almost hidden, but some are bigger..

My recent flare up has shown me what an amazing community  I have (and people say London isn’t friendly!!) I have had many offers of playdates, other mums have stepped in at the last minute to take my kids to school when i couldn’t or when i had an appointment. I used to hate asking for help, actually i still do – it goes against every bone in my body… but, do you know what? It is great for everyone – friends want to help, they like to feel they are doing something to make your life easier.. AND you get a warm glow from feeling supported… I am working on being more honest with people and avoiding the easy ‘fine’ to the ‘how are you?’ question.. how people take the answer is really interesting!

Anyway, (me waffle? never) back to the silver lining of the title. My kids.. Firstly i am lucky they are old enough (6 and 8), but me being able to do less has meant that they have had to do more. Really simple tasks that i would have thought just easier to do myself, I have had to hand over to them. Tasks that I would have just snuck in on the way to doing something else are being done by my little work force (!). Don’t get me wrong, it is not all plane sailing, but I think on some level they realise they can’t push me right now and they really are helping.

They can now shower themselves independently, brush their teeth (although I’m sure the mummy police could pick holes(!) in their technique), and get their PJs on with no help from me. (maybe the odd prompt shouted from my room, like i said not all plane sailing!). I lie in bed while they get on with it, and then they join me for stories in my bed. I actually look forward to bedtime now. I used to dread it, hoping that i had enough energy to see it through without screaming my head off, often having to walk around with my head down because I was so dizzy and out of breath… I can’t believe i counted this as normal. (duh)

My other go to silver lining is a slightly more dodgy one – my weight… I have always had to work quite hard to keep my weight down.. until I got sick four years ago.. since then, when my MCAD flares up, I lose weight…fast. My body stops absorbing food properly and off it falls. I love being thinner… but it is a dangerous game to play – I’ll dedicate a full blog to it at some stage..

#ehlerdanlossyndrome #eds #posturalorthostatictachycardiasyndrome #POTS #mastcellactivationdisorder #mastcellactivationsyndrome #mcad #mcas #chronicfatigue #mumwithfatigue #chronicallyill #invisibleillness #spoonie #zebra #chronicallyillparenting #silverlinings

 

Pacing bla bla bla

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Pacing makes mountains climbable… but its so BORING!!

I am programmed to be a passionate person who puts 110% into everything I do. I am smiley and over enthusiastic in everything I do!! (Illustrated here by excessive use of exclamation marks).

Sadly these attributes are not massively helpful when lack of energy/spoons (if you havent heard about the spoonie revolution google it-it helps make sense of energy issues with chronic illness).

I know that I have to be careful about how much I do. When I am sick or flared up I have no choice, my body puts its foot down, the world starts to spin/fade to grey and I have to lie down when my limit is reached. (Currently this is where I am. Mid rest, horizontal at 2.45pm).

The problem arises ironically when I am well. I am reassured when I butt up against my evil symptoms. It sounds weird, but I will often do AS MUCH AS I CAN and the symptoms I get (which I usually ignore) reinforce the all important diagnoses for my paranoid inner psyche to digest and ruminate over. Before I got flared up this time, I realised I was pushing through to that gritty place (you know where you have to muster every ounce of energy and will power) just to get through every day. Not good. You have to get on with things when you feel unwell when you have a chronic illness, I took that to mean ignore them… I need to find the middle ground. I’m rubbish at middle ground. Pacing-being measured and disciplined in what I choose to do and how I do it goes against my natural inclinations, but it is something I need to master to get the most out of my life.

I think I need to believe in my diagnoses to the point where I don’t push myself everyday. This all comes down to accepting me as I am now, not what I wanted me to be now/what I thought I would be now, but me with my illnesses. But also trusting myself-no I am not making a big deal out of nothing, no it’s not going to go away, I know what I am doing more than anyone-i can’t look for look for validation from anywhere (I won’t find it). Trust that I know your own body and what it needs and listen to it.

‘listen to your body when it whispers, then it won’t need to shout’

 

#ehlerdanlossyndrome #eds #posturalorthostatictachycardiasyndrome #POTS #mastcellactivationdisorder #mastcellactivationsyndrome #mcad #mcas #chronicfatigue #mumwithfatigue #chronicallyill #invisibleillness #spoonie #zebra #chronicallyillparenting