My migraine experience

I first started taking migraines in my early thirties. It was strange. At first I had no clue what was happening. I thought I had stared into a light a bit too long and the visual disturbance was just the ‘imprint’ of the element of the light. It continued to spread across one eye and, as it was a Sunday night and I was getting ready for work, I was seriously ready to phone my boss to tell her not to expect me in the next day because something had happened to my eyesight. I’m glad I never got to make that phone call because it stopped as soon as it started and that was that for a while. Thankfully there was no pain in the aftermath, just a strange visual show.

I had always been told migraines left you totally incapacitated, throwing up, unable to cope with life, bedridden in dark cold rooms for days on end, so when I got severe headaches but somehow carried on I dismissed them. It wasn’t until I was sent to a neurologist after my visual auras became much more frequent that I was diagnosed as having classic migraine with aura. I described how I had felt unwell all day, off my food, upset by smells but had persevered at work (because that’s just what I do!). I went home, sat on the settee, bent forward to pick something up off the floor and felt like something had exploded behind one of my eyes. ‘Yes, that’s a migraine.’ ‘Oh, OK then.’ We discussed possible triggers but could not find anything other than hormones. Just my age then. I was given Triptans to take if I got an aura and sent on my way. I couldn’t really say I was suffering when I saw how much some of my friends were completely floored by their migraines.

A couple of years ago then the migraine auras returned with vengeance. I wasn’t taking any medications to control my migraines but something had changed. I was really embarrassed because at one point I had not worked a full week in months. I was sent to see various doctors as I had had a whole plethora of blood tests done which revealed there was quite a lot going on beneath the surface. Too many platelets, raised tumour markers, positive ANA blood tests. It was quite scary, not to mention exhausting being sent around different departments.

I was sent back to neurology. Thankfully the neurologist didn’t suspect anything more sinister than migraines but he convinced me to try Topamax. I eventually gave it a go after reading the long list of side effects and trying to to weigh up the side effects with my migraines. I don’t want to scare anyone off trying it – some people use it and it works wonders for them – I lasted two days on it and took two days to recover. Not the drug for me so I left it feeling the migraines and auras were preferable to the side effects of this therapy. (Please, don’t let that out you off trying it, if you are recommended it. Everyone is different!)

During my various hospital rounds I was sent to haematology where I was diagnosed with Esential Thrombocythaemeia, a condition affecting the bone marrow which causes it to produce too may platelets which puts you at greater risk of stroke, thrombosis and so on. It can cause ocular migraines but in haematology the doctors still did not think this was the cause of my migraines. Instead they flagged up my other symptoms and my positive ANA and pushed for a referral to rheumatology.

Eventually I made it to rheumatology where I was diagnosed with a condition called Limited Scleroderma. I have a mild overlap with Lupus and inflammatory arthritis. Part of the treatment I was started on was to control my Raynaud’s. I have no idea how or why, but since I have started taking it, my aura have vanished. I get the very rare headache but this is nothing to the regular occurrences I was getting of the migraines beforehand. Recently I decided I would stop taking the tablets for my Raynaud’s because the weather was a little warmer. I had two migraines within three days. Lesson learnt.

I am aware that there are people who really have a rough time with their migraines but I seem to have found a way of controlling mine and I am grateful for that. Having this sort of a condition makes things really tricky – your social life, working life, relationships with friends and colleagues, your self esteem and self image all suffer. I was mortified – most people were very supportive and understanding whereas another acquaintance completely cut me to the bone with a throwaway comment about, ‘Oh yes, one of your ‘migraines’!’ Making arrangements was a bit of a challenge. The best I could do was say I really hoped I could be there but I did end up missing out on things and people I really enjoyed and liked being with. Thankfully my friends stuck by me. I know other people aren’t as fortunate.

While I would rather be disease free and in good health, I think my experiences have made me more aware of invisible illnesses and their impact on people’s lives. I am grateful that I am still in reasonable health. I obviously have a few health issues I need to monitor but I can mostly cope and try to keep myself active and challenged. If anything, I now realise how important it is to make of the good times and not to be defined by your illness – as much as that is possible. There are lots of therapies out there and I would encourage everyone to try and find the right treatment for you

Sunday night round up of the last two weeks

As I am sitting writing this up, I am feeling completely exhausted but also quite accomplished as well as having a lovely sense of having been part of something really important and meaningful for the cultural life of Belfast, my city and home to a certain Clive Staples Lewis. The event I am referring to was the Belfast Philharmonic Society’s 140th Anniversary Gala Concert.

The reason I refer to C.S.Lewis is that the evening culminated in the world premiere of a piece specially commissioned for the society called ‘The Seven Heavens’ composed by a remarkably gifted and modest James Whitbourn. The whole evening was truly inspiring and to have been a part of such a meaningful project was a real privilege. I am still trying to make sense of everything that has happened this week and the awe I felt when everything finally came together – the Ulster Orchestra, the Mulholland Organ, the Belfast Phil Kids and the Belfast Philharmonic choir, all under the guidance and leadership of our chorus master, Stephen Dougty.

So much organisation, team work, co-operation and vision have gone into seeing this whole project through to completion – from getting the 170 choir members onto the stage in the right order and in the right seats, to designing programmes, programme notes, promotion, to learning the notes on the page and making them into something more than little dots on ledger lines. Despite some of the press we get in the news in Norn Iron, there are very creative, industrious, thoughtful people in this part of the world and we can all get on with each other pretty well.

As for the piece itself, it was stunning. There will be another opportunity to hear it again on one of the BBC radio stations – wish I could remember which one! Apart from the musicality of it all, I now want to go back and re-read all the C.S.Lewis books I once cherished as a child and then as a young adult. Unfortunately, they were so good I felt compelled to share them and lend them out to some of my friends and then donate to the Church library. One of the many things I never liked about Kindles is that you can’t pass on a really good book. (There are other things I still don’t get about Electronic reading devices but I’ll save that for another time!)

In other news, and completely unrelated, I am now qualified to take indoor group cycling classes. I have no intention of doing so but there was a course on offer and I decided to do it. I wanted a challenge and that’s what I got. I actually cried during the first spin session of the day but then got over myself, didn’t walk out and stayed to the end. My certificate is now stuck to the fridge door – yes, I am a big child!

I did a slow 10K a couple of days after the indoor cycling course though I’m not sure how wise that was as my legs were still pretty much knackered and I was left completely bereft of any energy in quite a busy week. I’m not really good at spoon budgeting. (‘The Spoon Theory': http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/)

As far as this week goes, I have a lot of marking and reporting to do but I have to make time for my training. I have a personal training session on Tuesday and want to fit in a couple of jogs and a spin session. I find spin is a great cardio workout as well as leg strengthening without inflicting pain on my hips which do give me a bit of grief from time to time. I now have my Wednesday night’s back to myself so therefore more time.

A lot of catching up to do!

Where have the months gone? What have I been up to? What have the few readers of this blog been up to? I’m sure I don’t have many or even any! Let’s face it, my blog is not all that interesting but I’m a bit of a geek so I plod on – or not so much this winter – now ‘summer’….

I think the last thing I was attempting was the Belfast City Half Marathon. I was doing it for MPD Voice (now MPN Voice). ET has been reclassified as a Neoplasm but I’m still only taking aspirin. Long may that last! I did the Half Marathon and I didn’t come last, I came third from last… I was in agony the whole time and struggling with severe breathlessness, racing heart and excruciating leg cramps. Fast forward a couple of weeks and I get a letter saying I need my iron levels checked and I learn that they are in my boots. Bring on the iron tablets, sick leave, hospital procedures and appointments while someone tries to figure out how I ended up with an iron level of 3.5! Eek!

I’m glad to say that little episode is behind me and I am gratefully pressing on. I am training again. I am slow, I have put on weight but I don’t mind. I can now stay awake past 9:00, I can undertake more than one activity in the day and I am slowly getting there. I am back at the gym and I will be doing the British 10K in July. This time I will be raising funds for Lupus UK. After being ill and diagnosed with an overlap of Scleroderma and Lupus, it was important for me to set myself a challenge like this.

I really appreciate having some of my strength and energy back and love the fresh air and exhilaration of plodding along beside the sea – even when a squall blows up and whips the salty air up around your face and bites into your skin. Some of these days I might get a warm, dry run… Who knows? I’m looking forward to crossing the finishing line on the 12th July knowing that my illnesses have not defeated me (yet!) and hopefully raising a healthy donation to Lupus UK.

Sometimes life just happens…

It’s been a while since I posted here or, more importantly did any training. With the 14th September approaching at a faster pace than I can run, I really need to get focused on my goal. Yes, me concentrating on something for more than 5 minutes could be a challenge but it will be a lesson in perseverance and dedication, ‘character building’ might be the correct descriptor!

So far this summer, I have been training, reading, getting used to new medication, experimenting with alternative type treatments, spending time with family and friends, celebrating one more successful circumnavigation of that big yellow thing burning my skin but making the grass and flowers grow and generally relaxing. Looking back on how I was about a month ago, I am glad to say my energy levels are finally picking up and I think all the running, Zumba, Pilates and conditioning work are doing me good.

I have had a slight hiatus though. Last week a very close family member took suddenly ill and was admitted into hospital. You can imagine our concern, as the close relative described a pain in his chest and back and then started rubbing his left arm. We didn’t hang around. Mercifully it was ‘only’ gallstones. This means monitoring the situation, him keeping to a low fat diet and possibly surgery in the future. Thankfully the person concerned has decided to keep on with their plans instead of sitting around waiting for something bad to happen! Now things are settling down a bit, I can get back into my routine again (not that that was top of my list of priorities!).

So, I finally got out for a slow 5K last night. I was beating myself up for being so slow, when I remembered the considerable heat we are having at the minute. Hats off to people who run in really hot countries. It must be a treat to visit this part of the world by comparison! I rewarded myself with a glass of cucumber and lemon water – very delicious and very refreshing!

This morning I decided to get out earlier in the day. This helped me a little but I was still tired from last night. No worries though because the worst run was the run that never happened! I found the scenery inspiring and loved the feeling of heat on my limbs, after spending the whole of the Winter totally freezing. I don’t want to spoil the enjoyment of the moment by stressing out about the Winter, but I think I am going to have to take a lot of my training indoors this year. Shame because I feel really cooped up if I don’t get out for some part of the day now.

I’d just like to share some images now from this morning’s outing. On days like this, you wouldn’t want to be anywhere else!

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Flossy continues her training

So far this week I have been fortunate enough to have the time to go to the gym and put into my training. I am doing my best to stick to the programme my lovely personal trainer gave me and have been going to some of the classes on offer at the gym. Some of the things that have been frustrating my efforts at the gym have been lack of equipment or broken equipment but I won’t let that stop me!

This week, I have indulged in Pilates and Zumba as well as my weights programme and runs. The Pilates class was amazing. It brought it home to me how tight I have become in certain parts of my body. While I could not do everything the rest of the class was doing, I took the opportunity to have a good stretch where I needed it. I’ve booked into another Pilates class this week.

I don’t need to say much about the Zumba. I defy anyone to not to smile during a Zumba class. I find I forget how hard I am working as I get into the music and am challenged by the new routines. I am no dancer and left and right are often foreign concepts to me but I’m not alone in that! It just adds to the entertainment value.

Tonight I headed out to do intervals. I started with a 10 minute warm up walk followed by 10 sets of intervals of 5 minutes high intensity followed by 2:30 minutes walking recovery and then a 10 minute cool down walk. I was surprised at how much I enjoyed this and also suspect that my pace wasn’t much slower that when I am just out for a normal run.

Having a good soundtrack helps the efforts. Again I was inspired by Beethoven and that old chestnut, the 9th Symphony. I broke into a bit of a sprint (my standards!) at the end. I felt pretty jubilant and energised because of the music, the exercise and the weather. I just need to add another couple of tracks to my compact and bijoux playlist as it was just a few tracks too short to see me to the end of my run.

Right now I am feeling accomplished and am rewarding my efforts with fresh strawberries and Greek style yoghurt, very tasty! This week, apart from the exercise, I have been trying to concentrate on increasing the amount of fruit I eat. Filling in My Fitness Pal has made me painfully and shamefully aware that I do not eat enough fruit and veg. As the adage goes, ‘You cannot out train a bad diet!’

So that’s tricks for now. If you want to sponsor me, you can visit my Just Giving Page here:

JustGiving - Sponsor me now!

I’m running the second Belfast City Half Marathon on 14th September for MPD Voice. You can read more about the charity here:
http://www.mpdvoice.org.uk

In an ideal world…and what the gym lacks…

I was sitting feeling a bit sorry for myself yesterday evening. ‘In an ideal world, I would have done my run and feel refreshed and energised by it but I feel too rough today to do anything.’ I had a bit of a conflict going on between knowing I have to train to do a half marathon but feeling a little knocked about by the side effects of Plaquenil (mild) and using that as nothing but an excuse to do nothing.

A combination of realising I have made my intentions public to run a half marathon, have committed myself to raising money for MPD Voice, the sponsorship I have already raised and the thought that sitting around was not going to make me feel any better motivated me out of the very comfy armchair to get moving. ( sponsor me here! JustGiving - Sponsor me now!)
That and the thought that I have paid for a programme to help me with my training!

I am so glad I did go. What a perfect evening for a jog beside the sea which was like a mill pond! It was raining gently but still quite mild. I didn’t need sleeves or gloves. I decided I would set myself a target of one hour but ended up staying out a bit longer. After feeling so groggy all day I was surprised at what I was able to do. I know I was very slow and I had to walk a little but it was a much more enjoyable evening that the one I had planned for myself!

As I ran along the beach I was accompanied by Beethoven’s 9th. Ok, I know it sounds a little contrived and pretentious but it was the perfect accompaniment. It’s a pity it’s not as lovely or invigorating to sing as it is to listen to! I really did feel uplifted by the whole experience. To answer the title of this little entry, here are some pictures of what you do not get at the gym!

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Holy, Plaquenil induced trippy dreams, Batman!

One week is not a long time to be taking this drug of choice prescribed by my rheumatologist for whatever Lupus symptoms I am meant to be having. I have been told by many people to give it a few months and I’ll really notice a difference. From what, I am not too sure…

So one week in, I’ve now got the gurgly stomach and rowdy gut that I was told I might experience. This seems to be pretty common but what’s with these completely spaced out dreams? Like, hiding from Hitler behind a shower curtain and another one with lots of white BMWs driving down the wrong side of the dual carriage way near me. These are only some of the sketchy details I can remember.

I’m feeling pretty groggy now but I’m still going to force myself to do some sort of exercise tonight. It might help me shake off that tired, leaden feeling, as well as shifting the barrel that is accumulating around my midriff! I have a holiday in the sun next month and a bikini I would very much like to wear! Don’t want to be taken for a beached whale!