“Hysterical lady pains”

This time last week I was waiting for an ambulance to take me to the hospital. Completely un MS-related the general consensus was that I had appendicitis. It was all quite inconvenient because Mr C was away and I had plans. In the spirit of someone who has given birth without drugs (not by choice) I had already taken my children on their first demonstration, ferried them around to parties and Wagamamas AND “hosted” a Strictly party in a fair amount of pain before finally giving in and getting myself seen to, and thus learning about medicine from the patient’s perspective.

Not that I haven’t been a “patient” before of course. And the whole experience reminded me of the big fear I had when I was first ill – the fear of being “medically unexplained.” For those of you not familiar with this term, it is the label given to people whose pain and symptoms are not explainable by current medical testing or understanding. It is the name sometimes given to conditions like ME, fibromyalgia, IBS – conditions that doctors can’t explain scientifically, and some doctors don’t even accept as real. “Medically unexplained” is used by some as shorthand for “possibly all in their head.” My biggest fear before my MRI results was a diagnosis of ME because, however much more seriously it is taken now than twenty years ago, it still comes attached with a lot of assumptions about the type of person who gets a condition like ME and thus how they are treated by the medical establishment and wider society. And I didn’t want people making those assumptions about me – if there’s one thing I like, its being taken seriously!

I may have mentioned that my neurologist is eccentric to say the least – kind, very patient with my repeated (and denied) requests for modafinil, straight-talking and off-the-wall. One comment from my “diagnosis” appointment with him was him telling me “twenty years ago we would have said your symptoms are caused by you being an hysterical woman … now we can use MRI to see there is actually somethingĀ real wrong with you.” So I can be grateful for the white patches in my brain! A quick peek at the MS fora reveals hundreds of people in what they call “limbo-land” – symptomatic but waiting for a definite diagnosis, either because they have only had one relapse (you need two really for a MS label) or because their MRI doesn’t show the characteristic changes. This uncertainty must be frustrating, frightening and above all, difficult to explain to those around them and therefore for them to get the support and empathy they need. The initials MS mean that I don’t really ever have to explain further why I am struggling to walk some days, or why I am sometimes too tired to go out with friends. Without the label I would have to waste time worrying that people might think that what I have isn’t something “real.”

And that’s the worry that came back last week as the doctors argued whether it was my appendix (all the physical symptoms but normal blood tests), or ovaries, or something else. In the end the pain subsided and after a couple of days I was home again and back to normal (with a doctor’s warning that my appendix is likely to play up again soon and THEN they will take it out – here’s hoping its not Christmas day.) Three separate medical people have since told me that up to 40% of people admitted into hospital with pains like mine are “medically unexplained” and that most of those are assumed to be “women who are a bit needy.” This is taught as fact to medical students and junior doctors by the type of doctors who are only really interested if there is something to cut out. And undoubtedly that may be true of some – children feel emotional upset in their tunnies, why wouldn’t adults? But being on the receiving end of that assumption is horrendous. I could have told them that I was generally feeling physically better than I have for two years (hurray for Copaxone), that I feel relatively positive about the exams, am excited about qualifying and loving life outside of work so therefore could they please just stop fobbing me off, fix whatever it was and let me get home for the spaghetti putanesca I was dreaming off whilst they had kept me nil-by-mouth for 48 hours? I didn’t tell them any of this because frankly they wouldn’t have cared and because I have the rather infuriating habit of bursting into tears whenever I get fired up, thus completely undermining my own credibility. So I came home, apologised to all the fab people who helped with the children and getting my husband home, made the spaghetti putanesca, and spared an extra thought for all of those who suffer pain and disability daily and who don’t have an answer as to why. Because with an explanation comes hope of a cure, or at least the chance to slow progression or live more easily with the symptoms.

PS A number of people have asked me this week what I thought of the Jack Osbourne appeal for the MS Society on BBC1 last Sunday. My general view is that if you were a newly-diagnosed person or family member of such it would have been absolutely terrifying to watch because it highlighted how shit it all could be. But I suppose that’s the point of an appeal – the MS Society and MS Trust provide so much in the way of support, education and medical research that every donation helps each one of us every day. In the light of that perhaps your Christmas list could include one of these.

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I haven’t got time for this!

A blog forum I am linked to asked for people to blog about their to do lists and this seemed like an opportune moment to empty it all from my head in an attempt to order an increasingly fuzzy mind. There now follows a number of reasons why I sometimes don’t have space in my head to remember the correct word for the fridge. (Warning: if middle-class women bemoaning their first world problems irritates you you may want to skip this one!)

My to do list (by category, I am a keen filer).

Children:
Raise them to be kind, independent-thinking, empathetic and fun. Try to stop shouting as much and develop “Mother Earth” style patience. Try to stop being so demanding. Keep on top of all the school “stuff” so as to not forget money/outfits/donations/trips/events. Try to remember the arrangements for all the after school activities they do 1) because they love them 2) because I am trying to teach them that it’s not just about academic achievement (whilst undermining this constantly by tiger mother behaviour during homework sessions.)

Specific to Girl: perfect various celebrity hairstyling techniques. Listen to lots of clarinet practice. Help her with time-management as she is massively over-scheduled and fitting in homework/practice/relaxation is a challenge. Keep resisting the clamour for another after school activity. Keep up to date with new children’s books so she has access to the best stuff around. Remember which member of One Direction is which.

Specific to boy: lots of reading practice for this emerging reader. Try not to panic about screen time. Try to remember all the rules of chess because chess has replaced screen time as his latest obsession. Keep listening at all times because he moves from Harry Potter to Star Wars to Strictly Come Dancing to his school topic with alarming speed and I am frequently left behind. Try to get out of him the names of the people he wants to invite to his birthday party. Remember the names of the Moshi monsters. Try not to panic about the occasional burst of stick waving.

Home:
The never-ending round of washing, ironing and sorting stuff out. Maintain feeble attempts at decluttering. Keep teaching children how to sort out their own stuff. Try to recycle the kids’ toys without them noticing. Tidy the desk in my study. Pay bills/phone people/try to work out what to do about the wasps nest. Try to keep the house in enough order that I am not completely embarassed if someone drops ’round. In this area I am blessed with a fantastic friend who cleans for us and I also have a wonderful robot hoover. Both are essential.

Friends:
See as much of them as possible. Spend a significant amount of time on facebook keeping up to date with them all šŸ˜‰ Read the books for the different bookclubs. Book restaurants (my favourite places) and find people to visit them with me. Remember to tell them how fantastic they are.

Christmas:
(Today I bought Christmas wrapping paper. I have never bought for Christmas in November before, I think all that time on Facebook is filling me with a sense that it somehow needs sorting NOW). Try and work out how to meet boy demands for a wand that does real magic and a broom that really fles. Keep telling the girl that Santa’s elves don’t make mobile phones. Spend some time thinking about making some presents (I suspect I won’t get around to this this year.) Organise Sinterklaas meal for family.

Paid work:
I teach for a parenting charity and it is good, rewarding work but it involves a lot of emails and trying to find the right support for those who have specific concerns. Keep on top of these emails. Plan next courses. Explain to people why I am still doing it even though I have announced I am giving it up more than once.

Marriage:
Pay him some attention!

Hobbies:
Stop feeling guilty about the lack of pilates. Do more orienteering. Finish the Star Wars cross-stitch (maybe it will distract him from the lack of Christmas broom.) Carve out more time for knitting/crochet/cooking (all of which I love.) Find some time to do the census transcribing for a charity I volunteered for and for looking at the family history stuff my uncle gave me. Read more non-fiction. Conquer Candy Crush compulsion which will help with that time carving.

University:
Keep going. Stop panicking. Prepare for first exam in a month. Turn up at the hospital every day and learn things. Try and remember the stuff I am learning each day. Stop pointless worrying about what life is going to be like if I DO pass the exams and have to work such long hours.

and finally the MS:
Remember the injections every day. They really are helping. Yesterday was a bad day but currently most of them are good. Keep finding people online who have MS but are living life to the full. Continue to ignore all theories that tell me that if I stopped eating sugar I would recover completely. But I HAVE started trying to take high dose vitamin D every day (lots of evidence for this) but I keep forgetting. It’s almost as if I don’t have the time for it…