Migraine, Anxiety, Ehlers Danlos and Guilt

Our household has been plagued by migraine this week.  Whilst the actual physical condition only affected one member of the family, the anxiety it caused affected us all. The A level student is all but an adult, a tall, lanky young man not so different from every other adolescent on the edge of adulthood.  But he is afflicted with migraine headaches and anxiety which are becoming more and more regular.

da4c13fb137e5947d72059d0e43cdd2eI was much the same as a teen, but I think that mine reached a peak at about the age of 20, when I found myself referred to both a neurologist and gynaecologist.  Of course something that I now know that my mum didn’t, is that migraine is particularly prevalent in the Ehlers Danlos community – actually we had never even heard of EDS.  But mum has always experienced migraines, and we all have painful necks and what mum has often described as a lollypop head.  You know, when your head is too heavy for your neck.  I have memories going back to childhood of needing to roll my head and crack my neck, starting when sitting on a schoolroom floor looking up at the blackboard – yes, I am that old!

But now the anxiety comes from concern for the next generation in our household.  We are constantly being told that the mental health of our youngsters is on the decline, and the school have told us that there is enough work to keep the counsellor in full time employment for the sixth form alone.  I suppose we could say that whilst my  three have not been formerly diagnosed, I can recognise enough EDS traits in them and they all share high anxiety levels.  This, coupled with migraine and the stresses of coursework and public examinations for the second, have pushed me to become that mother who seems to be constantly emailing the head of year at school.  I have gone from merely attending parents’ evenings to contacting the school on a weekly basis and I even sent in an information sheet about EDS.e1d71b3efb257e52d557e74dca09aa6d

Being aware that your children, no matter how old they are, have inherited certain traits from you and believing that your own health issues have impacted upon them, is very different when actually seen written down in black and white!  An assessment that we received this week, in an attempt to help gain some control for my son over the migraines ahead of his exams, listed out issues for all of us.  In fact the only one not covered is the dog and he probably is the most stressed of the lot!!  He was a rescue who was diagnosed as special needs and autistic when we took him to training…..now aged 14, he is pretty happy so long as he is at home with no other dogs in sight.

Whilst the rational part of me knows that I shouldn’t blame myself, the irrational psyche is guilt ridden.  I know that many other chronic illness bloggers have written  how nothing can adequately describe the guilt that we can feel about the impact that our health has upon our loved ones. For me it has weighed more heavily  than ever this week as I read that assessment – maybe it is self indulgent to feel that I shoulder the blame for my husband’s stress related health problems, the university student’s peaks and troughs of angst with the world, the migraines of the A level student and the the now increasing subluxations of the lovely girl.  The kids all have pain in their hands and wrists upon writing, and my daughter has never been able to hold a pen “normally” to write.SONY DSC  It was only when I recently purchased finger splints that I realised that I too have always felt pain in my hand, struggled  with pressure in my fingers and found myself much slower at writing than my contemporaries.  For all of us aches and pains are just normal everyday.

 

Although we currently await an appointment for the younger two to be seen at University College Hospital, London where I was diagnosed, and the right medication needs to be found to stabilise the migraines, at least I have learnt enough to find the A level student qualifies for rest breaks during his exams – politics, history and English literature.  All essays…all heavy on bendy fingers, thumbs and wrists.   Thanks to all those who have offered support and advice when I have asked for help this week – you know who you are!

 

Empathy isn’t just for Xmas

We have been so unwell since my last post!  Duncan and I haven’t stopped coughing yet, I lost my voice completely last week – much to the delight of the kids – and have forbidden the student from coming home as I’m sleeping in his bed.  I have missed out on the various nativity productions at my primary school and have cancelled so many socials with friends I have lost count.images (7)  Panic started to kick in at the end of last week when the cupboards were bare and the fridge was empty, so we hauled ourselves coughing and wheezing to the supermarket.  As friends commented that they were busy getting everything done for Christmas, I was thinking that I hadn’t even thought about it let alone started!  Going from post operative recovery straight into flu/cough for nearly 3 weeks has not been a great seasonal prep time.

I have to admit that I have struggled with my back – coughing is rough at the best of times, isn’t it, putting stress on the abs, causing headaches and stress incontinence for us girls.  So the added stress on a not quite healed operation site has been tough.  My implant site (right butt!) and right leg has been so sore that some mornings I’ve woken up feeling like I’ve been beaten up and even resorted to my post op naproxen again.  The stimulation has actually made my nerve pain worse whilst I’ve been ill – I wonder why?  After nearly 3 weeks I am so fed up!  But on the up side, I have managed to get into the hairdresser’s seat this week and it is official – I am no longer grey.  Thanks to my lovely friend Bev, I now look and nearly feel 10 years younger!  Duncan and I got out to a carol service for the other school where I sit on the alumni association – I sang the carols beautifully.  Really easy to do when, as you open your mouth, no sound comes out!  It was here that I was given a piece of advice from an old school friend who has lots of remedies from his Indian grandmother.  We do lemon and honey hot drinks (unless like my brother and I, you can’t stand the smell of honey – long story going back to our childhood, our great grandmother and pots of coffee “thickened” with honey!!) whereas he recommended turmeric in hot water…..mmmm, delicious!  But I have been that desperate that I would give anything a go and, sweetened with a spot of brown sugar, it has proven oddly soothing.  Duncan has been well enough to drive to his parents today, we have shipped the teenage daughter off to stay with my brother and sister in law (thanks, Sandra!), and the boys are still at school/uni……so I am enjoying a glorious couple of days in an empty house.  Just me and my dog and rubbish Christmas movies……

For this is the season for goodwill, over indulgence, sentimental tv and bonhomie, isn’t it?  How many of us struggle to maintain the cheerful face as everyone around us appears to be having such a fantastic time?  Whether it is loneliness, grief, poverty or illness, there are a myriad of reasons out there that actually make this time of year very difficult for some of us.  Guilt is another emotion that gets in the way.  Guilt that you aren’t feeling jolly; guilt that your condition is keeping your loved ones from the activities that you feel they should be a part of; guilt that others feel that they must tiptoe around you; guilt that you can’t do for your friends and family what you would want to; guilt for feeling jealous of them.

It really is so true that when the chips are down, we find out who our friends are.  Over the twenty or so years since I have had my back problems, I have been surprised more than once by both the friends who have stepped up with support and those who have not!  This old adage is even more true with a chronic condition.  I am well aware that for some people my disability makes me a bloody nuisance these days, but it can still be hurtful.  I don’t want to have to constantly ask for a lift for instance, but when “friends” just no longer even think to ask or offer it is tough.  I was listening to the fantastic Adele’s song “Million Years Ago” and she seemed to be singing my song when she describes “not being able to stand the reflection I see; my life flashing by; missing my friends, when my life was a party to be thrown; but that was a million years ago”. images (8) I can see my friends’ lives moving on, careers unfurling, travels taking them far and wide, and I do feel that mine has come to a stand still.  Self pity?  I hope not.  More being realistic and understanding my limitations.  Note to self – New Year, new pain relief with the scs, new stage in my life!

I received a text today from a very supportive friend apologising for being a “rubbish” friend for not being in touch recently.  Yet her teenage daughter, who has an Asperger’s diagnosis, had tried to commit suicide.  Have you noticed that it is often the people who are in the most difficult situations themselves, who are also the very people who do make the time for their friends in need? I guess this goes back to the “when the chips are down” again – when we have been there maybe we develop a heightened empathy.  A friend who has been particularly supportive of me and of Duncan since his  mental health breakdown last year, has undergone her own battle with breast cancer, including extensive reconstructive surgery earlier this year.  Kylie Minogue took the time to surprise a young woman in her home, with a party live on a BBC show last night to “thank” her for the work that she has done for a breast cancer organisation.  What marks her out is that she was undergoing her own treatment for breast cancer, diagnosed in her late twenties, looking at the possibility of infertility, and yet pushed herself to run marathons, fund raise and praise the bravery of other women around her.  Of course Kylie had her own personal experience to drive her to want to do something for this young lady.

download (1)Christmas!  Looking on the bright side, Star Wars is back in our cinemas, the X Factor has finished and Jose Mourinho has been sacked……sorry, Duncan!