Monday, 16 September 2019

One Second Every Day - September: Week 2 // 2019


Monday 9th September

Had a mail writing session today. I've gotten a bit behind so I'm trying to catch up. Also worked on my blog putting some post together and creating some graphic and shout out for guest posts so I'm not leaving it too late.
I've also made a start on taking things off my notice board. It looks so bare but it will be nice to see it fill up again.


Tuesday 10th September

Had a seizure this morning and though my brother tried to help he did the worst thing possible and held me down so I'm in extra pain.
That took me out for the rest of that day.


Wednesday 11th September

Forgot to set my alarm but my medication alarm woke me up so I woke up with plenty of time to get ready for my appointment.
My appointment went well. It was my counselling session today and my counsellor has been doing some emotions work with me as I find it hard to name my thoughts and feelings and she gave me some homework sheets which I like having at hand to do when I'm struggling.
After my appointment I got some lunch. I've found today difficult and having my brother at home has been extra challenging today. I've just wanted a day where I can curl up on the sofa like I normally do, especially when I'm struggling, with a nice quiet house to myself but I couldn't and I just felt cooped up in my bedroom and I couldn't sit in the sunroom, even though I love that room, because I needed to be laid down because of my orthostatic intolerance (basically my body functions better when horizontal).
I'm now in bed and I just want to sleep. I'm crying because I'm tired and I'm pain and it's been a hard day and I don't like changes to my routine (my brother being here messes everything up, though at least he's been quieter today).

Thursday 12th September

Managed to wake-up sort of on schedule today and I got ready on time for my dietician appointment. I wasn't quite sure why I was seeing the dietician but for the first time ever they've found me a completely milk free supplement drink so not more having to be maxed out on benadryl all the time. Hopefully they'll taste okay and I can freeze them as when I'm ill I can't even sip on the drinks but I've discovered having then as ice lollies I can tolerate them.


Friday 13th September

Today me and my brother went ta a family member house for tea. They did really well at catering for me and I had a nice time. We had tea and then we played a game. I felt really spaced out and couldn't focus my eyes and my brain had turned to candy floss. Later at 10pm I realised that I'd taken my night time medication with my 6pm medication - big oops! (And it's not the first time I've done that). So when I got home I settled straight into bed.

Saturday 14th September

Woke up feeling rubbish, probably because of my medication error yesterday so I had different levels of medication in my body and my body was out of sync. So today had been a curl up on the sofa kind of day.
I've been wanting this eyeshadow palette (my makeup collection is slowly growing; I must have swapped buying craft stuff for makeup!). It's the brand Revolution which my stepsister introduced to me and she told me about how they do this mystery bag offers where you get £26 worth of products. So I got my eyeshadow palette and I also needed some primer and body scrub. I'm excited for my order to come as I'm interested to see what mystery products I'll get.

Sunday 15th September

Still feeling rough from yesterday's poorly day. Looking forward to Bluebird coming tomorrow and having a nice shower and hair wash.
My migraine is really bad today with pain the base of my neck, the head pain, auras and anti-sickness medication having little effect. Thankfully it's eased off now. I've kept onto of taking pain relief and my Sumatriptan and I had a nap too.
I'm now in my pj's and ready for bed.

Video description

  • Monday: A card with the date in purple and my hand writing 'Dear Gina'
  • Tuesday: A digital clock with turquouse surround and three buttons. The time goes from 9.59am to 10am with an alarm going off at 10am
  • Wednesday: Opening the draw of my Birchbox which has a floral decoration ad the draw is blue revealing the contents
  • Thursday: Opening a letter with a letter opener. The envelope has some pretty floral tape and stickers on.
  • Friday: Turning on a tap which has a pretty waterfall design.
  • Saturday: Putting drops of essential oil which is in a blue bottle into my white aromatherapy diffuser
  • Sunday: Shaking up a bottle of tincture which is in a brown glass bottle

Sunday, 15 September 2019

GUEST POST by Michelle on living with Trigminal Neuralgia // Pain Awareness Month // 2019

[A caucasian woman with brown
hair and purple hair wearing a
cream jumper]
It's Tuesday morning, about 11am. For the third time since 7am, the ache pulsing through the right-hand side of my face has turned into indescribable bolts of agony. Some describe it as electric shocks, but today it feels like someone has flipped an "on" switch, activating searing acid trying to destroy my face from the inside out. My teeth and gums are indistinguishable from my jaw and cheekbone. They're one amalgamated plate of pain. I sit on the floor and grip the hair on the other side of my face, incapable of doing anything except scrunching my eyes and whimpering "ow, ow, ow." One of my dogs tries to comfort me by licking the only exposed skin area he can find: that searing side of my face. It's my breaking point. I call my doctor's surgery to tell them I need an urgent telephone appointment. I'm giving in, relinquishing my quality of life to the side effects of the medication that will help.

To some extent, knowing what's happening to me helps. If you put your palm on your ear and splay your fingers out- pinky under the lip, middle finger towards the nose, thumb above the eyebrow-you've got a rough idea of the three nerve branches in your face. Each branch has a few coming off of it, but that three-pronged nerve is where the "trigeminal" in "Trigeminal Neuralgia" comes from. The "neuralgia" is nerve pain. Often, in TN, there's an impingement on that nerve. It can cause misfiring on one, two, or even all three branches. For those whose MRI shows a reason for their pain, a surgery the decompress the nerve puts you out of action for about two weeks, but in return they're likely to have years free of torturous pain. This is more common in TN type 1, which is usually flashes of pain. In type 2 typically has longer periods of pain, more of a "strong, consistently throbbing face ache." This usually doesn't have an obvious cause that can be surgically rectified. People can have both, and often distinguishing between them isn't quite straightforward.

TN used to be referred to as "the suicide disease" because of the intense pain. It is debilitating and exhausting. Those who have been through kidney stones and pregnancy as well as TN agree that TN is by far worse, and harder to treat. Before vaguely effectivetreatments existed, mary resorted to suicide. When my flare ups were only occasional, I didn't understand. When I became paralysed by pain repeatedly in the day, I understood. Cold wind on my face was a trigger. So was eating on that side of my mouth, brushing my teeth, blowing my nose, and a plethora of other benign things.


But I'm lucky. My dentist recognised the symptoms and didn't recommend pulling any seemingly healthy teeth to try to resolve the issue. Many others have had multiple teeth removed. Nor have I had to argue with my GP about my symptoms being psychosomatic or a migraine. Neurology advised on medication to start prior to my referral. Others waited months for even this. I'm hoping that an obvious physical cause will be found so I can have a long-term intervention instead of dulled pain, nausea, and thrice daily naps courtesy of my current medication.

Thursday, 12 September 2019

GUEST POST by Emma for Pain Awareness Month

[Image description at
end of post]

Where it all began...

So it all started when I was 16 (2013), taking my last set of mock GCSE exams. I was in a Business class preparing for my upcoming exam when I started feeling unwell, very hot and itchy hands. I went to the toilet to wash them as I thought I'd touched something that didn't agree with me. I came back to my class and was sent straight to the medical room as the redness and itchiness had spread to my whole body. I was having an allergic reaction, of course I didn't know this at the time. Fast forward a week later to being in the business exam, the same feeling came over again and I was taken out of the exam and put in the medical room where I was then sent to my doctors who diagnosed me with an allergy to Diclofenac an anti inflammatory medication. 

27th March 2014 - This was the day where everything changed! 

I was my final mock exam before the real GCSE's. At this point I took my exams separately to everyone else as sometimes I needed a scribe or extra time. I was standing outside the room when my legs suddenly were in excruciating pain, I held it together and sat in the room to do my exam where I was left on my own, I was so agitated, I couldn't settle, wriggling all over the place, so much so I couldn't complete my exam which I normally would easily get an A grade on, I got an E! 

From that day onwards I was in excruciating pain, that never went away. I had to still try and walk to and from school every day which I slowly deteriorated at, needing a walking stick to walk home, getting taken to school in the mornings and ended up getting picked up after school. I could only walk it for about 2 weeks since the first date, I was so slow and in so much pain that when I got in through my front door I would cry so much I was screaming, then take myself to bed because I was so fatigued. I ended up needing a walking stick constantly to try and move around the school, for which I was bullied about.

Anyway, my memories of my exams are awful. Through it all, I left school with good grades, enough to get me into college to qualify in Childcare (my dream job) and away from the bullying.

30th October 2014 - Diagnosis

I finally got diagnosed with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis, I'd deteriorated so much I was in a wheelchair most days or using a Walker. 

March 2015 - Flare

My Childcare course was going well, I had great friends around me all supporting me through. Until I had a major flare, Paramedics were called as I physically couldn't move without screaming. The paramedics decided it was best for me to stay at home but they would get the emergency doctor out to me, however they did find I had a rapid heart rate for which I now have to take beta blockers for. 
I spent a month sofa bound, my poor parents took it in turns to sleep with me on the sofa's to help me go to the toilet etc. 

June 2015 - Disappointment

I was finally able to get over the flare to then be told that I wasn't allowed to complete the second year of my course due to how ill I was. To say I was heartbroken is an understatement.

I was then left with 3 months to try and find another course as I had to stay in education until I was 18 so I decided to try a nail extensions course which I loved! 

In September my health improved drastically to which I rarely relied on a wheelchair anymore. 

October 2017 - Happier

I had left my awful old job in the salon in April, I suffered so badly mentally afterwards. My health had gone back to a steady level, barely relying on any mobility aids. I was doing so well that I decided to start my own business as a Nail Technician and I was doing really well, I had a good client base behind me that supported me entirely. I was me again, doing something I loved, in my own time and being my own boss was amazing with the ability to give myself a day off when my health took a dip. 

October 2018 - The evil within

I was doing so well up until this point, a year into having my own business, expanding on range of treatments. 2018 was a tough year, I'd had a bad experience with a "client" and then losing my fur baby Charlie who I adored, I had a lot of stress in 3 months which I think had a lot to play with what's to come. On the 27th October, my parents went out for an evening, the first in a long time, our dog looked like he needed a walk so I took him on a very short walk to which I only got 100 metres when I was walking like I was drunk and stumbling around. I stupidly carried on with the walk, came home, climbed the stairs to get 3 steps from the top and to collapse on the step I was on. That week I had a further 43 falls. I developed twitching and spasms. We went to the doctors who said, give it a month and if it doesn't improve I'll refer you to a physio. That never happened as he left the practice. My new doctor took me seriously straight away and sent am urgent referral to to a neurologist.

I carried on deteriorating, developed a gait, constant twitches and spasms so much so I hurt myself and I had two slipped discs from falling so much!

I was unable to keep my business anymore as it was too dangerous. I could no longer be left on my own under any circumstances and unable to cook or prep food myself due to my own safety.

March 2019 - Diagnosis, part 2

I was later diagnosed with Functional Neurological Disorder, an incurable and very disabling illness which has taken many peoples independence, mine included! Just like ME/CFS, people will go through better periods but will never fully "recover". FND is almost a 'sister' illness to Multiple Sclerosis and Parkinson's.

I had many blood tests which came back fine and many MRI scans which identified the slipped discs, the Neurologist was happy with his diagnosis and referred me to Kings College Hospital to confirm the diagnosis by a specialist (which she did) and Neurophysio. 

September 2019 - Life

Fast forward to the present day and I'm no different since March. I have identified that certain things will set off my twitches.

I have started Neurophysio; it's very early days yet as I've only had 2 appointments but I used the exercise bike the other day for 5 minutes and it felt amazing, it felt normal and free.

We have had adaptations done to our home to help me around the house, i.e a lower step and grab rails on all outside doors and we are currently having our bathroom changed into a wet room as I can no longer bath. We will shortly be having a stair lift fitted too as I'm having to go up and down the stairs on my bum as it's so dangerous that I could fall at anytime. 

End notes

Thank you for reading my blog post, thank you Naomi for the opportunity.
To the person reading this, I hope you feel like you are not alone. If anyone is ever struggling please talk to someone, the spoonie community is an amazing one, we are one big family. Reach out to someone who has similar or the same conditions and you'll be amazed at how much of a relief it can bring you. 

I would lastly like to say a big thank you to my boyfriend who has been with me since 2012, he knew me as a "healthy" person and has stuck by my side through the whole journey. I couldn't have asked anymore from you in your support and guidance through it all. And a big thank you to my parents for always believing in me, doing what they can to help and supporting me to get the best care I can get. 

Emma 

Image description

A young blog woman with a fringe, she is smiling an is wearing red lipstick

Tuesday, 10 September 2019

One Second Every Day - September: Week 1 // 2019



Sunday 1st September 

Because of my meltdown last night I forgot my night meds last night. So I woke up feeling awful like I do when I forget my night meds plus PEM from Friday is kicking in so I've just been so ill and rubbish today.
I've been in my pj's all day have the odd nap on the sofa and I found a bit of energy to do some drawing. Flop also enjoyed a munch on the grass and got grumpy when I had to bring him inside when it started to rain.
When my carer came this evening se changed my bedding for me and she suggested about getting a shower to make me feel a bit better so we did that and I'm in clean pj's. I feel tired out but I'm looking forward to feeling freshened up after my shower and getting into bed with clean pj's and bedding.

Monday 2nd September

Quite comfy clothes day in. Did some blogging but I mostly didn't/couldn't do much due to a bad migraine.

Tuesday 3rd September

Still felt a bit headachey but I had a MDT meeting and cancelling wasn't an option as it would have messed up a lot of people's diaries.
When I got home I had an hour to have lunch and recharge before my carer came.
Apart from medical related things I haven't left the house in a while and I really needed to get some errands done. Picked up some toiletries from Superdrug but they didn't have in the eyeshadow palette I wanted, but I've got plenty of makeup to keep me going.
Most important stop was Specsavers to update my prescription in my sunglasses (yes I know summer is over but when you're photosensitive sunglasses are a year round essential).
We had time for a quick coffee before heading home.
I'm now shattered, looking forward to a day off tomorrow, (though I'm unsure how much quiet I'd get with my brother staying over). I have tummy ache from the coke Dad bought (why the heck does coke need barley malt extract?!) and my migraine headache is flaring up again (probably not helped by gluten).

Wednesday 4th September

Had a nice lay in and I'm enjoying having an appointment free day. Feeling quite fatigued and my my pain is a dull ache in my nerves, joints and muscles which is sometimes worse as it just sits there in the background but it's not bad enough to take something for it. I which I had a giant heat pad. I used to have a heated blanket but after the 3rd replacement broke in the same way I decided as much as loved it that was a faulty product design.
After tea my stempmum and  played a few rounds of Rumikub which was nice.
I'm not just tucked up in bed still with my migraine.


Thursday 5th September

Had an appointment with my autism support worker today. It was nice to have someone to talk to but also be free to ask questions which I daren't ask other people like "what's does it mean when a person is 'warm'" (not relating to the temperature of a person). We're also going to create a 'Hospital Passport'.
I had a rest when I got back and then I sat and replied to a few letters.
My stepsister came round for tea and after we played some games including Codenames which I love.
After chatting for a bit I started getting ready for bed but I'm struggling to sleep and I'm not sure if it's because I haven't have a 'proper' rest/nap and I'm over-tired?


Friday 6th September

Had another appointment today. Patient transport picked me up and took me to and orthotics appointment to get fitted with some new shoe orthotics.
Home and I had a rest for a bit before tea. After tea we had a game of Monopoly which I enjoyed but it got difficult and frustrating towards the end as I was tired and brain fogged and could think or concentrate well and my seizures where playing up. It was still nice to have family time though.

Saturday 7th September

Had a long lay-in this morning and spent the rest of the morning in my pj's. The rest of the day was uneventful and I just spent it trying to recharge.

Sunday 8th September

My brother has been an an annoying state today. He's used to people and doing things so feeling a bit cooped up in the house. I'm quite the opposite to him and more like my Dad. We both like the quiet and are happy at home.
I did a bit of blogging today. I'm working on a post about 'Pacing, Activity Managment and Rest'.
My bedtime routine has completely been forgotten about and I seriously need to get back into it.

Video Description

Monthly opening page. A green background decorated with digital stickers such as a sloth, rocket, whale, coffee pot and cactus, and September in purple writing.
  • Sunday 1st: Flop munching on some food
  • Monday 2nd: Pressing buttons on the TV remote
  • Tuesday 3rd: Stirring and tapping my spoon on the edge of the cup
  • Wednesday 4th: Bagel popping up out of the toaster
  • Thursday 5th: Spreading margarine on some toast
  • Friday 6th: Monopoly board with dice, houses and playing cards
  • Saturday 7th: Spread of postcards including some Pantone colour postcards, tourist postcards, an illustrated postcard with plants on and a handmade postcard
  • Sunday 8th: Time lapse video of something going through the laminator

Monday, 9 September 2019

Pacing, Activity Management and Rest

What is Pacing?

Pacing can be used by anyone living with a chronic illness/disability.

Pacing is helping you to keep a healthy balance between activity and rest by spacing out activities during the day. It enables us to take better control of our health and stay with our body's limits, even when we are unwell, and become experts in managing our health and life better and prevent exacerbating symptoms, or even causing a crash or relapse.

Though learning how to pace ourselves in can bring improvements in the way we feel and whilst it does take a lot of patience and self-control to learn how to do it in time most people are able to do more.

Learning how to pace ourselves allows us to gain a better awareness of our own limitations which allows us to better manage our energy levels and maximise what we are able to to on a daily basis.

It does take a bit of practise and work (and I'm still learning and improving myself) but once you've mastered it it will significantly help you manage your health.

The Traffic Light System

Traffic light 'to do' list from
© Stickman Communications
With he traffic light system it gives you a visual way of balancing activities to help you maintain your energy levels. and plan your day (for planning see below).

Green are easy tasks/activities
Orange are okay tasks/activities
Red are challenging tasks/activities

So with the traffic light system if you were to do a red task on your 'to do' you know to follow it by a green task or a period of rest so as to avoid overdoing yourself and making your symptoms worse allowing you carry on throughout day.

What is so good about the traffic light system is that you can adjust it for how you are feeling that day. So on a good day making a telephone call may be a green task, but one another day where you're running low of energy or you're feeling anxious making a telephone call may be an orange task.

What you label as red, orange and green is individual to you. 

Alternatively you could label green could also be labelled as rest, orange for low energy activities and red for high energy activities.

On bad days is is best to do more green and orange activities and if possible avoid red activities.

(Pacing Sticky Notes from © Stickman Communications) 


20:10

20:10 is another easy way to get a balance of activity and rest in your day. It basically entails 20 minutes of activities followed by 10 minutes of rest. On a bad day you could swap this around and do 20 minutes of rest and 10 minutes of activity or whatever is manageable for you. 


What is 'Activity'?

An activity is anything that uses up our energy, it may be physical, cognitive or emotional energy; basically nothing that is not complete rest. This could be anything from baking a cake, laying down listening to an audiobook and even getting upset or being in pain.

Using a balanced and steady approach towards activities prevents the tendency to overdo things which leads to an inevitable crash, relapse or exacerbation in symptoms.

Planning


Planning your day out is also a really important so you can spread out and use your energy wisely. You can use analogies such as 'Spoon Theory' to help you plan out your day and where to spend your energy of 'spoons'.

When planning what actives that you will do that day think it's important to categorise activities such as: physical, cognitive, high energy and low energy. This is where the traffic light system can be useful.

On bad days you should aim to do more green and orange activities.

I find using my pacing whiteboard and post-in notes really helpful to plan my day out, and if I do find myself running out of energy I can always rearrange the magnets to something that will be more manageable for the rest of the day. It's also a great visual tool, especially to colour coding (and I couldn't resist buying coloured whiteboard pens too!).

My whiteboard plan for the day using the Traffic Light system

Set yourself some reasonable and manageable goals for the day, like getting dressed, washing your face and spending some time out in the garden. Whatever is manageable for you to do on that given day. 

Remember, it's okay to have bad days and it's okay to do little on those bad days.

Find your baseline and stick to it, if 15 minutes of studying is manageable then just study for 15 minutes then take a break. Look after yourself as a car can't drive without fuel. Don't push yourself beyond your threshold, especially to please others, prioritise your limits, yourself and your health. And if that means cancelling plans then that's okay. 

(Pacing Fridge Magnet Set from © Stickman Communications)

Activity Management

This is slightly different to pacing but the idea behind it is very similar.
"Activity Management is an approach that combines pacing (which is to stabilise your ability level and grading (which is used to build up your ability level). - Severe ME/CFS: A Guide To Living by Emily Collingridge
To manage activities effectivity you need to listen to your body and work out how long you are able to do an activity for - this is your baseline. Your baseline is the amount of one activity you can do consistently without your health worsening. When you know your baseline you can know better your limits for good and bad days.

Everyone's baseline is different and how long one person can do a particular activity for differs for someone else.

When working out your baseline it's important not to make your symptoms worse. It may be help to keep a diary of your activities each day and note how long you was able to do that activity for to help you work out what your average baseline is. When taking your notes also make a note of your emotions as that can affect or energy levels as well as other notes such as your level of pain that day and breaking activities down with periods of rest. Slowly you will grade yourself up to increase the time you spend on an activity. When you listen to your body and let it guide you as to what activities you are able to do when; when you feel able to do something or not do something

And remember, it's okay to ask for help.

Switching

Switching is an important aspect of activity management. Often when you have a chronic illness/disability focussing on the same activity repeatedly during the day can exacerbate and make symptoms worse.

By doing different activities during the day can mean you are able to do more.


So switching could involve watching TV followed by making and eating lunch followed by doing your physiotherapy exercise followed by sitting in the garden with a hot drink. Doing this means you are doing a variety of different types of activity - cognitive, physical, high and low energy. Also, don't forget to plan in rest periods too.


Prioritising 

Try to prioritise the most important tasks and remember that there is always tomorrow. I find writing colour coded lists helps or using my reminders app which sync across my mobile, laptop and iPad helpful. You could carry a little list book or diary around with you or get a pack of differently coloured post-it notes.

When writing your 'to do' list or plan for the day make not of what actions have the most urgency, such as ordering medication you're running out of. It might help to number your list from 1 being to most important so you know that action needs to upmost attention so you can get them done first before your batteries start to run low.

If you're going through a rough time with your health and you have a lot of appointments it might also help to prioritise your appointments (this is something I've been doing lately). Look at what appointments you have, what appoints are important or can't be changed and what appoints can be postponed to a later date  so as to give you more time to rest and recuperate.

What exactly is rest?

Often we think that resting is laid watching TV or listening to music, and even though we are physically resting we are still actually stimulating our minds by using up cognitive energy - such as having to concentrate on the story line and listen to what is being said.

Complete rest means having no stimulus around us ignorer for our brains to rest. No sound, light, smells etc. To help you have complete rest you can put on an eye mask and use ear plugs or noise cancelling headphones/ear defenders. Whist resting you may try out breathing exercises, meditation or other things like visualisation. This type of 'neurological rest' allows or bodies and minds to recharge better.

When you have a chronic illness/disability, especially if you struggle with chronic fatigue having regular periods of rest or relaxation during the day is important when it comes to pacing.

Remember: never feel guilty for resting.


To sleep or not to sleep?

Some healthcare professionals say the having a sleep during the day can help to get better sleep as bedtime as this prevents getting over tired at bedtime resulting in difficulties getting off to sleep.

Some experts say they you should not sleep after 3pm.

Other professionals contridict this and say it is not necessary to sleep during the day and daytime sleeping can affect sleep quality at night.

I think its about really listening to your body. If it get to after lunch and your body just can't function without a nap then have a nap and then you can gradually build yourself up from sleeping during the day to just having a period of complete rest.

(Since reading about this doing this post I've been having a rest/nap in the afternoon and I have found benefit from this.)

Links and References

Saturday, 7 September 2019

Migraine Essentials // UK Migraine Awareness Week 2019

I've written about migraines before but that was more of an info/awareness post so because of my frequent migraines I thought I'd write a list of some of my personal migraines essentials which you might find helpful.

Everyone's unique and have their own personal essentials and tips and tricks but here are a few of mine...
  1. Dimmable lights 
  2. Cooling forehead pad/cold wet flannel or forehead roll-ons
  3. Eye masks - I either use a cotton or I have another which has a gel insert which I can pop in the fridge
  4. Comfortable noise cancelling headphones or ear defenders/ear plugs
  5. Whatever medication you need and take for your migraines and for pain relief and anti-sickness
  6. Big tumbler of water/juice to keep your fluid intake up and with ice cubes in
  7. Plenty of cushions and pillows to get you into a comfortable and supportive position
  8. Pjs, (because they're more comfortable and lighter to wear)
  9. Just-in-case sick bag/bowl 
  10. Having your phone nearby
  11. Communication cards - I get mine from © Stickman Communications 
  12. Cooling air fan
  13. Something easy to do which can help distract you like listening to a podcast or audiobook on the lowest volume.
  14. Rehydration solution
  15. Snacks as I find this easier than big meals, cold things like ice lollies or sorbet are especially nice
[Purple background with purple text saying 'Migraine Essentials' and a collage
of different items from the list including a lady with a flannel on her forehead,
a drink tumbler, headphones, an ice lolly, and iPod, an air fan, a gel insert eye
mask, pyjamas and a man reaching for a mobile phone next to his bed.]

Wednesday, 4 September 2019

GUEST POST by Vicky on Living with Chronic Migraines // Migraine Awareness Week 2019

My life with chronic migraines started when I was around 17, during my last year in secondary school when I was in the middle of my A levels. I had suffered from a few headaches in the past but they were more ‘I hadn’t drunk enough’ or mum nagging me to ‘not spend too much time on my laptop playing sims’ sort of headaches. One day a migraine struck, it hasn’t left since and from that moment, the headaches were daily. I went dizzy, I felt sick, I was confused, things didn’t seem real and I couldn’t see. My head was pounding, my eyes hurt and I felt very unattached from my surroundings. A lot of these symptoms are now the normal for me and I experience them all of the time. There isn’t a moment during my day that is headache free. 

This period was extremely tough and in some ways, it still is. Feeling like this isn’t nice, it’s hard to cope with and it definitely gets you down. Back when the migraines first hit, I faced the doctors for the first time and poured my heart out to them about how I was feeling. I broke down. All I kept thinking was why wasn’t I normal? Why was everyone else able to work and go to school still and I wasn’t? Did other people feel like this? Was this pain normal? I continually beat myself up inside around why I was feeling this way. So many emotions continually overtook my mind and because of those thoughts, I developed anxiety. I didn’t want to leave the house, I didn’t want to interact with other people, I didn’t want to see my friends or family and I completely shut myself off.  However, I did manage to achieve my A levels by completing them from home and for this, I’ll forever be proud of myself that I managed to finish school. 

Fast forward a few years and I have developed chronic fatigue alongside having a vitamin d deficiency. My joints continually ache, I have a regular sleep pattern but feel like I have never slept, I struggle to walk and keep my balance and my concentration is pretty non existent. 

Over the past couple of years, I have seen various headache specialists, neurologists and doctors for the pain. Some have understood, others didn’t seem interested and I quickly found the right support. Never settle for those that don’t listen to you. Make your voice heard. Migraines are way more than ‘just a bad headache’ and it’s important to get across how much they impact your day to day life. I have spent way too many years tucked away in my bedroom hiding from the world, suffering in silence because people wouldn’t hear me out and just kept prescribing medication after medication. 

My main GP is now a huge part of my journey and I am confident and comfortable when speaking to them. This, I believe is key. Find someone who you’re confident and comfortable to really open up around. At the start of my journey, I was told to ‘be the change that I wished to see within the world’ and this has honestly been my go to. It has kept me going and encouraged me to not give up. 

We are now in 2019. I have had therapy to help with my anxiety and thankfully, although the pain is still there, the anxiety is much more under control.  Don’t get me wrong, I still have anxious moments - don’t we all? but I am now able to face the world. I leave the house, I see my friends and family, I’m in a long term relationship and I have a full time job. Again, this is something I am extremely proud of and I’m lucky that I am able to work, as I know many migraine sufferers aren’t able too. 

As for treatment, I have received occipital nerve block injections, medications, various rounds of physio and more recently I have received botox to try and ease my migraines. Unfortunately as of yet, nothing seems to have worked for the pain and I have been referred to a specialist headache clinic in London. I have been offered Vitamin D injections to try and boost my levels to see if they can fight my daily fatigue and I am seeing a pain management team to tackle the daily pain I still experience. 

Through all of this, I refuse to give up and I believe things will get better. To me, healing looks like a future. Healing looks like a house. Healing looks like being able to create a stable family home and bring new lives into the world. Healing looks like travelling. My dream is to see more of the world and I believe that one day I’ll be able to do all of these things. 

Chronic migraine is now a part of me. It has shaped me into the person I am. Not many people my age will have been through what I have and I believe it has made me a stronger individual. We tackle life together and I believe you accept me and you accept the migraines that I come with. I decided to start my instagram and blog as a way of expressing how I felt but also to create a strong and supportive community. I want you all to know that whatever it is you’re going through, you are not alone. We are a community. We are a team. And we shall face the world, one step at a time as one big family. Knowing other people who are going through similar are only a message away is something that has really helped me during my recovery and it’s what I wanted my account to be about - An open place that others can share their experiences but also teach others about what they’re going through.

Monday, 2 September 2019

Migraine Awareness Week 2019

It's currently Migraine Awareness Week in the UK. Today 190,000 people in the U will have had a migraine - myself included.

Migraines are something I battle with a lot! I have Chronic Daily Headaches/Chronic Migraines as well as Migraines with an Aura and the rarer Hemiplegic Migraines.

At the moment I've had an ongoing migraine for almost two weeks now and it's no fun at all. 
For me migraines are just part of my life and I have learnt to live with them. Somedays I can about function near enough normally whilst having a migraine which can be quite deceptive, like Have a migraine now but I'm able to blog now (just in a dimmed room with a dimmed screen and tinted lenses). Other days I feel incredibly ill and like my head is being crushed and I can barely talk or function. 
They are not something I would wish upon anyone. 
With bad migraine days even simple tasks can be painful and difficult. 

When I have a migraine I have to take lots of different medications to try to relieve my migraine: Sumatriptan (triptans are migraine prevention medications), pain relief medications and antiemetic (anti sickness) medication. Unfortunately theses things don't completely stop or cure my migraines, they just give me a little relief.

One day I hope a cure for migraines can be found, but so far there is only prevention and management of migraines. So for the meantime people like me must just try our best to cope as best we can.

What is a Migraine?

A migraine is much more than 'just a bad headache'. They are a complex neurological condition which come with a wide variety of symptoms. There are also many different types of migraines and there's no such thing as a 'typical migraine', so what a person experiences or is a migraine trigger will be completely different for another person, even if they are experiencing the same type of migraine - confusing or what?!

The cause of migraines are unknown but it is believed that migraines have an underlying genetic factor and women are more affected than men.

In the UK migraines affect around 9 million people, they affect some people more often than others. Some people may just have a few migraines in their lifetime, but other people like myself it's not uncommon to have several migraine attacks a week.

When a person is experiencing a migraine it is referred to as a 'Migraine Attack'. Migraines can last from anything from a few hours to a few days.
The term 'Chronic Migraines refers to when a person has 15 or more migraine attacks a month.

Migraine Symptoms and Stages

These vary depending on the type of migraine but some common migraine symptoms include:

A migraine can present as a painful headache alongside other symptoms including
  • Pain in the head
  • Visual disturbances
  • Sensitivity to sound, light and smalls
  • Nausea and vomiting 
  • Fatigue/lethargy 
It's had to predict a lot of the time when a migraine will hit. However migraines follow a sort-of set of stages:

1. Prodrome or pre-warning stage.

In around 60% of people with migraines they will have a pre-warning stage. This stage is difficult to work out as to whether you're going to have a migraine or if your just feeling unwell. Symptoms may include mood swings, fatigue, muscle stiffness and hypersensitivity. 
For me I get quite confused, irritable and difficulty concentrating, I get spinal/neck pain (that spot where your spine meets your head like I have now), throbbing temples, hypersensitivity and visual disturbances.

2. Aura

This stage doesn't happen in people who have Migraines without and Aura.

This stage includes a wide variety of neurological symptoms. This stage usually lasts from 5 minutes to an hour. They usual happen before the migraine but for some the storms can last during the migraine too.
For me especially the visual changes an speech problems last longer for me.

It is caused by changes the cortex are of the brain. 

Some people may experience visual disturbances.
Other visual disturbances may include seeing dark or coloured spots, stars or zig-zag lines. There may also be numbness or pins-and-needles, muscle weakness, dizziness. A person's speech and hearing can also be affected. Memory changes can also happen, such as feeing dread, confused.

For it's like I'm seeing the Northern Lights in front of me, I can slur, forget or stumble on words and sounds gets muffled or I get a dull ringing in my ears. I also get a feeling of dread and confused.

I also have a rare type of migraine called Hemiplegic Migraines where I get numbness/weakness, pins-and-needles and speech loss and down one side of my body (symptoms very similar to a stroke) but thankfully these systems ease of after a while.

3. The headache or 'main attack'

This part is 'the headache' which can involve different types of head pain typically throbbing and made worse my moving your head. The pain can also feel like a pressure in your head like a crushing sensation.
Pain can be from moderate to severe to unbearable (the the point you which you didn't have a head!)
The pain is usually on one side of the head, button always.
The pain builds up gradually and is made worse by physical activity. So this is the time to stop, lay down and rest.

As well as the pain other syomtoms may include hypersensitivity, fatigue, dizziness/diorientation and mood changes.

In my aura stage I also get nauseous but when I have the headache the nausea worsens sometimes to the post I'm actually vomiting, probably due to the pain. My hypersensitivity can also worsen.

This stage can last from a few hours to several day, sometime longer for some people.

Resolution

Most migraines slowly fade away, bu in some cases they may suddenly stop after a person is sick or cries a lot. Sleep may help a lot of people and can help the person to overcome their migraine.

4. Postdrome or recovery

This is a big like a 'migraine hangover' once to he ache has settled which can make hours or days to overcome. Symptoms can be similar to the first prodrome stage.

Types of migraines

  • Migraine without an aura - this is the most common type of migraine affecting around 70-90% of migraine suffers
  • Migraine with an aura - a common type of migraine with additional neurological symptoms 
  • Chronic migraines - this is the name given the you have 15 or more migraines a month and recently defined sub-type of Chronic Daily Headache This affects less than 1% of people so yay me, not!
  • Menstrual migraines
  • Hemiplegic migraines a rare type of migraine (year me again!) which have symptoms that resemble a stroke, but the symptoms are temporary
  • Migraine with brainstem aura, another rare type of migraine, formally known as basilar-type migraine

References and Links


One Second Every Day - August: Week 5 // 2019



Monday 26th August

PJ kinda day. Got up quite late this morning. I had a seizure last night mid brushing my teeth so my energy was extra zapped. Dad and I had a game of Rumikub and then we had lunch together. I need to work on my pacing and resting. This evening I sat on the sofa and made some word searches to go into letters to pen pals, but I forgot about pacing myself and got really tired but now I'm struggling to sleep.



Tuesday 27th August

Hardly slept at all last night. Part pain pat insomnia. The ironic hing about M.E. is that during the day you're so exhausted and fatigued yet come night time sleep just doesn't happen. I need to try harder at my bedtime routine. I think today I'll try dong some reading about pacing, activity management and sleep.

Had another pj day. I spent too long on my laptop/phone again!
I got a lovely painting in a letter from one of my pen pals today. My noticeboard is very nearly full.
This evening I managed 10 minutes of tidying and Dad's put a couple of boxes of things in the spare bedroom for me today to go through and bin or put away this a) clears th floor space in my bedroom so it's more calming and b) the temperature is cooler in the spare room.
I've done a little reading on activity management. I'm going t try and keep a note of activities to work out my activity baseline and I'm also going to try and have a proper rest/nap after lunch as I read to sometimes using yourself through to day and you get to bedtime and you're overtired and therefore have difficulty sleeping.


Wednesday 28th August

I had a nap this afternoon to see if it would help me sleep at bedtime as I read that getting overtired can cause problems sleeping at night. I struggled to get off, and eventually I did drop off and I slept well.


Thursday 29th August

I slept well, though I was awake at 6am with a headache but I managed to get back off to sleep for a couple hours before my alarm went off. 
I didn't manage to get much rest today. Yesterday I got asked if I'd be interested in speaking to ITV about the changes to Blue Badges (disabled parking permits) and I emailed ITV back to say I'd be happy to help. I got a phone call and they set up for someone to come round today. So at 4pm I had a journalist come round to film me and speak about my Blue Badge, how it helps me and my thoughts on the changes. Last month I did a blog on the subject of Blue Badges and the proposed changes. The filming took a while and I was exhausted after but I didn't get much change to get a proper rest especially as I have to get ready for going back to London tomorrow (I was there last week). Thankfully I don't have an early pick up time but I still want to get up early. I'm shattered so I how I'm not over tired and will struggle to get off to sleep.



Friday 30th August

Had a long day today with another appointment in London. Today was a gastro appointment. Thankfully it wasn't an early pick up from patient transport and I didn't have to be up stupidly early but it meant I was home late.
The patient transport crew was nice and looked after me well. There was a worrying 10 minutes after my appointments when all he lifts stopped working and the patient transport crew was looking for the stairs to carry me down in my wheelchair but thankfully one lift started working again and we made it downstairs.
Whist we was waiting at the pharmacy I had a seizure but I was in safe hands. At least on the patient transport ambulance I can lay on the stretcher and sleep.
When we got home they made me a cup of tea and ensured I was okay.

Saturday 31st August

Had a pj morning until my carer came and I got a shower and hair wash. I then had a chilled out day and had a nap. Then at tea time I had another carer come and she went to pick up my medication from the pharmacy as it could be delivered on Thursday.
The evening was difficult, I had quite a big meltdown.


Video Description

  • Monday: creating my own word search puzzles
  • Tuesday: Darkness outside the window with flashes of lightning
  • Wednesday: Turning the pages in my sticker file
  • Thursday: Turning on a light switch
  • Friday: View looking out the window from a laid position in the patient transport ambulance
  • Saturday: Opening an instant latte sachet