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Friday, 7 March 2014

Migraine: confidence, self esteem and living a full life

There can be such a tension between what we want to do and what our bodies seem to let us do. I guess everyone experiences that as they get older but for me as a migraineur, I have looked upon older people struggling with their deteriorating bodies and have deeply identified with them! I was in my thirties when I first felt this and on some dark days, I have thought "oh my goodness, I have years of this struggling ahead of me".

Migraine is like a recurring reminder of your body's need to find a predictable, unstimulated, routinised existence. The migraine beast constantly tries to pull the migraineur back to a scaled down version of life. The migraine beast likes things to be really simple and safe. He is at his happiest accompanying me to work or social events or holidays! Hand in hand we walk to work and sometimes, like the children I live and work with, he starts to play up! I come home with the beast trying to set up home inside my head!

So when new opportunities arise that look like they could add a sense of reward and excitement, yet may stretch us because these opportunities are new/demanding/exciting/ what do we do?

I find myself as a working migraine mum wondering lots about how to handle my use of time. Do I say no to new things because they may make my life harder and may give me more migraines?

I guess health does need to be a priority as without health you can't function at all. But there comes a point when taking on some activities that bring you a sense of excitement, reward or fulfilment can in fact be healing itself. To live your life through migraine is inevitable when you experience them so regularly but somehow, we need to be able to put the migraine beast in his cage so that the effects of this beast don't permeate everything we do. I have found that working a little has helped me enormously in developing my confidence and self esteem.

I have gone too far in the past, trying to pretend that I don't have a chronic illness. Denying the Beast can also be detrimental to your well being. Yes, migraine is about awful debilitating pain and all the other symptoms but the effects of recurring migraine can cascade into all aspects of life...confidence, self esteem, career, social life. Denying it, or to put it another way, hiding it, is another way of adding pressure. I have realised when I keep getting migraines and get stuck in that cycle of pain, it would be better to be honest with those around me, especially my work.

So what is the answer.? I think a continued reflective way of living. Being aware for space, rest and unstimulating environments and trying to find these where You can each day. This is not easy living in a family as children and work normally present the absolute opposite to what a migraineur needs! So, an even more concerted effort needs to be done in response to the times that are out of our control...I find this a constant battle, a way of life and makes me realise I am living with a disability. Because of this, I have decided to tell my boss and be more honest. I'm hoping that will help me handle the load at work better and my attitude towards the beast.


Keep calm and don't let the beast take over.


MM xx

Tuesday, 4 February 2014

Coping with a chronic pattern of migraine

I'm a walking migraine. No work today and only just managed to be mum this morning, trying to pack my 3 off to school.

"Mum, I can't find my tights". Migraine mum scrabbles around in the drawers.

"The tights must've been washed....let's try the linen baskets".....washing flies everywhere...no luck...."hmmmm...", hand on chin and looking into the sky, "the tights must be in the tumble dryer" (I'm beginning to sound like Sherlock Holmes, working out some intricate mystery....THE CASE OF THE MISSING TIGHTS)...migraine mum runs like a maniac downstairs (not a good idea as movement hurts my head even more, I feel sick)....we only have 5 mins to go before it's time to leave for school (stress, I'm not dressed yet either). "Brush your hair and teeth while I am doing this" I shout  up the stairs...(ow) but child 2 & 3 decide following me around is much more interesting...oh no, wet washing in the tumble dryer......"ok (last resort) let's look in the washing machine. Aha! Mystery solved! Just wear these ones! " (the ones she wore yesterday.....a bit smelly but hey ho! They are dry!)

Some days I can get requests like this from all three children before school and it serves as a reminder to me that Migraine mum is not keeping up with everything.

For a couple of months, I have been getting migraines that keep coming back. I feel as though my body needs to stop and rest but I have been ignoring this. I am in a cycle of pill popping and catching early nights to cope....it's not working. I found myself crawling on the floor at 3am (not ideal), looking for a tablet I had dropped....then going downstairs to get more tablets and a drink of water. When I woke this morning, I looked in my glass of water and saw a floating egg cup! Even amongst the pain and weariness, I found myself chuckling at that! My brain is definitely not working!

So why am I in this chronic pattern? I think it's all to do with pacing myself...again! I don't give into them because I am frightened that my life will be reduced down to migraine. I love working and I hate missing out. I feel I have so much to give. I want to be a mum full of energy and fun, I love being creative but this seems to drain me. I am frightened that if I start to give into the migraines, my boss will start to notice and then I will be questioned as to why I am off so much. I want to be seen as a person who is well and not someone who can't cope with life (my interpretation)...I feel weak and unreliable. Sometimes taking a pill enables me to carry on so when I get a migraine I work on the theory that once the pill has got into my system and the pain has gone, I can carry on as normal and no one needs to know. It's like a dark secret that only my most dearest will know... This works the majority of the time but not at the moment .

I have no final answers today, only that I am now listening to my body. I think I need to review how I am spending my spare time (which I have been filling with lots of creative and satisfying activities that make me feel alive!) Perhaps migraine mum needs to accept that being mum and working a little is enough and may be this chronic cycle of pain, exhaustion and more pain will fade away again. My head says yes but my heart says no!

 For now, i'm off for another sleep (This morning, I was rudely awoken from my 'healing' sleep by my neighbour drilling in the room next to mine...what are the odds)! MM x

Thursday, 9 January 2014

Chronic migraine and a gluten and dairy free diet

Drum roll........ladies, gentlemen and people who suffer from a unilateral, throbbing headache, nausea, sickness, aversion to light, noise and movement......migraine mum is baaaaaccckkkk!

What a blog-break! I only popped out to the chemist to get my lorry load of drugs and suddenly it's 2014! Just over a year without writing........

My blog has never been completely out of my mind as the ongoing life journey of living with migraine continues. Despite my absence, migraine mum has continued to be read by you fellow migraineurs from the UK, Russia, New Zealand, America and countries in Europe. It really is a widespread illness and people need support. Clearly there are loads of us literally searching all over the world for answers.

So why did I stop writing? I got a job! I know! I never thought I'd be able to even look for a job, let alone get one!

When I last wrote, I had been on a gluten and dairy free diet for 6 months. Those 6 months were frustrating as I found no great changes in my pattern but I couldn't seem to eat any gluten or dairy without being ill (stomach and migraines). Then, in September 2012 my migraine pattern gradually started to change for the better. The first sign of this was me getting side effects from a drug I'd been taking everyday for a year!.......my only explanation was that my stomach was beginning to absorb the drug better.......May be my stomach was healing?

I think it was. I noticed the very mild stomach problems I had been having we're lessening too. And my head seemed to be the next part of my body to heal. Apparently, people with coeliac disease have inflammation in their bodies......could a gluten intolerance create inflammation in a person's head?
Anyway, I felt great and suddenly felt loads more energy to do things I hadn't felt like doing for years!

You all know this.....Migraine puts you into an awful vicious cycle.....the migraine makes you ill (sick, intense pain, unable to move, unable to tolerate life), you get exhausted trying to cope with it at the same time as all the demands made on migraine mums and dads (children still need company, bottoms wiped, food cooked, tantrums handled etc whether you are ill or not). The drugs themselves can make you feel low and tired, you don't eat because you feel sick, and the food you do eat sits in your stomach like a brick or ends up vomited down the toilet!

CHRONIC migraine in my experience does all of the above repeatedly through the weeks,  PLUS it affects mental health, confidence and self esteem. So I surprised myself how quickly I wanted to get back into employment. I started very cautiously and I am now doing 14.5 hrs a week, working with a child in mainstream school.

Am I cured? I still get 2-4 migraines a month and I think they have got slightly worse again since doing more hours. I still need to monitor how I sit, how much sleep I have, when I sleep, when I eat, what I drink and how much, how I relax and how I handle stress and hormones just add a multitude of problems. No I am not cured.

Can I manage work, children, and a busy household? Well, it's taken me over a year to tell you lot about it which suggests that life has been rather busy! I am enjoying the demands more and able to say yes to more things (I even had a vodka without a migraine the other day!). So I do feel like I am now in the world of the living!

I am not saying everyone with migraine should do the same as me. We will all have different tools to help us. I would love to hear what has worked to lessen your pattern or severity.

PS my only regret re the diet is that I didn't get tested for coeliac disease. I feel I should've done.





Tools may be required for diet, sleep, drink (water, caffeine, alcohol), posture, fitness, relaxation, drugs, managing time for doing and eating. What tools do you have in your kit? Do you need to find any more? We will all have different solutions as we are all unique but I really hope that somehow my story can help with yours.

Tuesday, 2 October 2012

Migraine and Sleep: Migraine Mum's top 6 tips for good sleep hygiene!

Yawn.

Migraine Mum is tired.

No one told me that having children meant that you'd never sleep properly again!

Does this sound familiar to you?..........

Midnight toilet trips escorting child no 2, crying (not me!), snoring (not me again!), next doors children waking up and crying, migraine pain waking me up at 2am, 3am, 4am and yes, 5am (me wandering around the house looking for drugs, ice packs, cold flannels), child no 3's 4th birthday....3 excited children all awake at 550am (yes the same night I had been up on and off all night with a migraine!). And all this was made worse by me having late nights watching Inspector Montelbano (fantastic) and Doctor Who (It was me crying last night after seeing Amy and Rory died!)

We all know that lack of sleep is a trigger for migraine. And too much sleep for that matter! No wonder it's hard to be wild! I can hear my migraine brain saying "ooh, you'd better not do that, you need to go to bed", "ahh, I don't believe you wanted to do that! Haven't you learnt that a lie in makes you feel worse?!" "Don't do that! You might get tired!!!" Oh, there must be a healthier way of managing all of this.

Well yes! It's called: 'Good Sleep Hygiene'. Here's Migraine Mum's top 6 tips
1. Check your bed.....do you need a new one?! (we saved up for a new one after working out our existing one was probably about 25 yrs old. That explained the weird clunking noises and back ache!)
2. Ear plugs: I've also just treated myself to a pair of luxurious ear plugs. I figure if the children are really crying for me, my husband will be sure to tell me!!
3. Early nights. I have made a pact with a friend today to get an early night. Into bed by 10pm......if one of us goes to bed later than that, then there will be a forfeit!! I'd better speed up on this blog then!
4. Naps. When I'm really struggling for sleep, I take a daytime nap. I realize the desperate need for sleep when I am reading stories to my children and they say to me "mummy, why have you got that funny voice?"...and I say in my slurred speech, "well, that's me being clever, reading and sleeping at the same time!"
5. Don't over complicate things on the days you are feeling washed out. I am quite stubborn. If I have decided to cook a Shepherd's pie one day even though I know I am tired and feeling migrainy, along side having multiple deliveries and pick ups of 3 children at various clubs, friends....whatever, basically I am like a bee buzzing around with it's bottom on fire, I still do it! Why?
6. Relaxation: baths, meditations: see www.topguidedmeditations.com (website and app available) If I can't sleep, I find the meditation for getting to sleep really helpful.See also 'headspace', available on from iTunes or android.

Also, read Alex Nesbitt's article at the Migraine Trust for loads more information on good sleep hygiene www.migrainetrust.org/research It's called "Sleep and Migraine: Reluctant Bedfellows?"

Good night From Migraine Mum, hope your sleep brings peace from your little ones, rest and good health. x

Tuesday, 25 September 2012

Migraine and the Future of Treatment

Hello there fellow blogettes. This week you are going to be treated to a write up of the EHMTIC (trying saying that when you have a migraine) conference.

We met at a hotel in London. I felt like I was part of a club, as we were all given a bag and some lunch (gluten and dairy free options of course, copious amounts of water, smoothie juice and decaf tea!). This gave us the chance to meet fellow sufferers and we were all swapping stories and advice. I also felt really in awe of the researchers who are so committed to helping us migraineurs. So if you ever feel alone out there because of your illness, remember these researchers who are working every day, all over the world to make things better for us. One of the researchers from California said to us "looking at you lot out there gives me strength!" He wants to help us!

I wrote copious notes, hardly any of which make sense to me now!!! SO here goes:

Migraine and Depression: research indicates that if you have migraine you are at risk of developing depression (apparently the risk increases to 50%). The talk also suggested that anyone with a chronic pain disorder (migraine, arthritis, back pain) would be at risk of developing "depressive symptoms". He also suggested that this is bi-directional ie if you have depression, you are more at risk of developing migraine. The research has not concluded whether there is a common mechanism behind depression and migraine, but recognises that they are both fluctuating disorders of the brain. In his opinion it was considered that the best treatment for people with migraine and depression was the trycyclic anti-depressants (amitryptyline, dosulepin), not SSRI's (prozac).

How your GP should care for your migraine, what NICE says: interesting facts I learnt were as follows:
1. for a bad migraine take a Triptan with an Ibuprofen or paracetamol
2. No evidence for ergotamines and cocodamol (risk of rebound greater)
3. Acupuncture has been recommended, and you can ask your doctor to have it on the NHS
4. a 400mg dose of Riboflavin (B2) is helpful

Migraine and Sleep:
Interesting facts I learnt:
1. A nap has been shown to terminate some migraines (could lead to an argument for employers to supply somewhere to sleep, as this in turn could help the migraineur to stay at work)
2. an imbalance in sleep can lead to headache (lack of restorative sleep)
3. if you do have a sleep problem, there are solutions (melatonin and light therapy) Look out for your local sleep clinic!
4. watch out for premonitory phase (yawning, irritable, craving) particularly late at night as quite often the pain of the migraine develops between 5am and 9am.
5. make sure you are getting 8 hrs minimum sleep a night. Anything less (esp 5 hrs or less) puts you at greater risk of more frequent migraines.
6. Those with migraine have a significant tendency towards circadian extremes (night owl or morning lark)

Future Treatments:

1: drugs being developed at the moment are steering away from affecting your arteries and reducing reccurence of the migraine. Good news for the over 65's who can't take the triptans, and good news for those of us who end of taking so many drugs which then in turn cause us more migraines (rebound migraine)
2: Occipital Nerve Stimulation
3: Magnetic Stimulation

The Researcher predicted that in 4 to 5 years some of this would be widely available and described it as similar to the mobile phone industry. Do you remember those huge "mobile" phones that looked like bricks? Well he said thats where we are with Magnetic and occipital nerve stimulation equipment at the moment, but in a few years time, we may be having small devices that will fit into our bags......

So if your transient receptor potential cation channel isn't working very well, I'll see you next week for Migraine Mum's next instalment. xx












Tuesday, 18 September 2012

The Migraine ToolKit: ways to manage your life with migraines

Migraine Mum hasn't taken a triptan drug for 12 days!!!

This is big news! Well may be it won't quite make the BBC news headlines, but I feel like I need to tell someone! I'm usually reaching for a triptan every 3 to 5 days but this last fortnight I seem to be able to rely on aspirin. I am having headpain every day now, not a migraine but a low level ache in my eyes and head/neck.

You may be wondering how or why the long term pattern of a migraine every 2-3 days has changed.......

Well to be absolutely honest, I don't know.
  • The children have gone back to school and my youngest is doing 2 more sessions at nursery than last year.......more space, less stress?
  • I have been trying to get more sleep (though the children have been waking me a lot over the last few weeks and I know I am very tired)
  • I have reduced the amount of sugar by eating a lot less cakes, biscuits and puddings.
  • May be finally the gluten and dairy free diets are paying off?
  • I've resumed my pilates stretches and a small amount of exercise.
  • Saw my cranial osteopath two weeks ago?
The puzzle continues. There is no one thing that is a cure. As we migraineurs know, what works for one person, doesn't for the next. But we are all like mechanics, carrying many tools in our toolkit in order to 'fix' this illness. What I firmly believe is that we can all build our own toolkits to manage our own migraines and the people around us effectively.

Here's some guidelines for building your toolkit based on The Pain Toolkit (www.paintoolkit.org)

Tool 1: accept that you have migraines...this can help with how you deal with the migraine and how you respond to it emotionally.
Tool 2: Build a support around you: friends, a good Dr, family, other migraineurs, blogs(!), join the Migraine Trust/Migraine Action
Tool 3: Pace yourself: try not to over do it on the days you feel well
Tool 4: Learn to prioritize and plan out your days. Build in relax time and fun. What brings you to life? What calms you?
Tool 5: Set yourself goals and action plans
Tool 6: Be patient with yourself (the migraine is a sign that you need to  step back and look after yourself, be kind to yourself)
Tool 7: Learn relaxation skills (you have to teach yourself to do this!)
Tool 8: Stretching exercise (pilates, yoga) and Exercise (take it steady)
Tool 9: Keep a diary and track your progress
Tool 10: Have a set back plan: who can you call for help? Let others step in when you can't manage. You don't have to be superwoman.
Tool 11: look after your body: eat healthily, drink lots of water.
Tool 12: Keep all of this up! It is a way of life and it will help you to feel you have a life...

Good Luck! Oh and by the way, I am going to the Migraine Conference in London, this Sunday the 23rd September 2012. It is a public session, so anyone can go, see www.migrainetrust.org or phone 0207 631 6970. I will no doubt be blogging about it next week.


Tuesday, 11 September 2012

Migraine puzzle: gluten, dairy or detox diets?!


I have a confession to make.
I went to the National Migraine Clinic in January and was on a 3 month review. I haven't been back......

I am scared. Scared of what the next step will be. The Consultant mentioned detox which involves taking yourself off all your drugs you have for migraine treatment for 6 weeks. No analgesics, no triptans, nothing. Arggh! Panic!! I cannot see how I can do this with 3 young children. There is no time that would be a good time to inflict that on myself or my family. May be a stint in the Priory would suit?

So instead, I have chosen to cut out gluten and dairy on top of all the other things I have stopped eating and drinking. It is a last ditch attempt to change the migraine brain chemistry and see if I can make a difference......if it doesn't work (which it hasn't yet) I guess I will have to take a deep breath and face my fears.....

I do feel better on the gluten and dairy free diet. I have more energy, a feeling of desire to do things and play with my children more. I feel that my mood is consistently good, not many tears at all and my stomach behaves itself better. I am getting less head pain during the day and when I am well, I feel really well.

I chatted to a friend who is a dietician. She said after 2 months you should know if there is a link. I thought "whoopee! I've been doing it for at least 2 months so I can start eating and drinking what I want again!" I started the very next day with cows milk on my gluten free cereal......within 40 mins I had a migraine........

Then on holiday I thought "well, I keep getting migraines, so I will relax and treat myself to a bit of gluten, yum". That night I had awful stomach pains, nausea, cramps in my legs and arms and joint pains. Two days later I had a 3 day migraine and felt really low and teary again.

If I am intolerant to gluten and dairy(which I think I might be), why, oh why hasn't the pattern of migraine changed?!

Migraine is like an eternally evolving puzzle which you can't seem to ever finish. I know you get migraines for many reasons, but I just hoped that diet might have been a big chunk of the solution. I'm not ready to give up yet as at the back of my migraine brain I wonder (rather simplistically I'm sure!), that may be it takes longer for the healing to get from my stomach to my head!? Another couple of months and may be then I will face my fear at the Migraine clinic..........