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About Laura

Introduction

Laura is a former primary school teacher, blogger, poet and jeweller living in Sussex UK. She is a positive thinking, mum of 2 teenage boys and is happily married to Joel. Laura is an IIHer, chronic migraineur, patient advocate and mental health campaigner.

After developing a debilitating brain condition, IIH, in 2014; she sadly had to give up her 14½ year teaching career. Soon after being diagnosed, she turned her life long love of writing into this blog to document her journey with chronic illnesses. This evolved into raising awareness of disabilities, chronic illnesses and mental health.

Laura runs the Mission Migraine Twitter account, which raises awareness that migraine is much more than just a headache. Laura started her own business Paprika Jewellery & Accessories after starting to make jewellery as a distraction from the pain.

She writes poetry to explore her own mental health and well-being. Laura writes about positive thinking and living her best life, despite her conditions. She hopes to inspire others to find their own sense of purpose, whatever challenges they face. Continue reading About Laura

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Why I’m done with online support groups for chronic illness! #chronicillness #chronicblogs

If you follow my blog you’ll know that I’ve been very active in a variety of support groups since becoming chronically ill in 2014.

So why the change of heart?

In nearly every group I’ve joined, there’s been a culture of drama and/or negativity. I love to support others, but my health was suffering by getting too involved and I realised that I was done with being an active group member. I have left most groups, so I want to explore online support groups and share my experiences.

What is a support group? 

  • A face to face or online community open to anyone, but often focused on specific topics i.e. mental health or pain conditions
  • Led by a professional facilitator, such as a nurse or counsellor, or by group members/founders
  • A comfortable space where individuals come together to share their stories, experiences, feelings, coping strategies and information.
  • A way to help reduce isolation and loneliness by realising that there are others dealing with similar situations.
  • A bridge between medical support and self-help

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Why I joined online support groups

Rewind to when I first fell ill. I was isolated and lonely as friends began disappearing from my life. I was struggling to understand my illness and my mental health was suffering. When I joined an online support group, I realised I wasn’t the only one with my diagnosis, which helped my mental state. However, the negativity in the group exacerbated worries about my future. I decided this wasn’t the group for me.

So, I joined an open group called Mission Migraine. It was full of amazing women and had a positive vibe, yet we all supported each other. What I loved most, was the we shared our own stories to raise awareness and challenge misconceptions.  I was proud of what we were doing, so I started the Twitter account @migrainemission to continue raising awareness. Sadly, the Facebook group is no longer running.

Finding the right fit

I knew that Migraine wasn’t the full picture, so I explored a variety of groups to help me understand what was happening. I connected with other people with similar symptoms to my own, in well led groups. I was able to access information to help me research possible causes of my symptoms. In one group, I read about a consultant in Cambridge, specialising in Pulsatille Tinnitus. This was a pivotal moment in my journey! If you don’t know my story, then you can read it here.

DesignWhen I was initially diagnosed with a rare brain disease, Idiopathic Intracranial Hypertension (IIH), I joined IIH support groups, which helped me find information and reassurance. Soon I became overwhelmed by the number of Facebook groups I was in, so had to decide which of these were right for me. I left those that weren’t. I’d found more friends who totally understood my pain!

When it no longer does what it says on the tin

In most groups I joined, I’d encourage positivity and try to raise confidence levels. I’d post inspirational quotes, share knowledge and helped other’s learn to celebrate the smallest achievements. Helping others gave me a sense of purpose and achievement.

But I couldn’t get away from the drama.

Design

Members of support groups are vulnerable, with many suffering with unrelenting pain, crippling anxiety, financial or family worries. This creates a breeding ground for negativity and arguments. If this disruptive behaviour isn’t dealt with effectively, then the group is no longer able to support it’s members and is not fit for purpose.

As an empath, I’m susceptible to getting  too involved. I gave so much, but my physical and mental health were suffering. What I was getting out of these groups now? I’d had enough of group politics and feeling responsible for near strangers. I worried I’d lose friendships, but when I did leave I was flooded with relief. And of course, my true friends have stuck by me.

Would you benefit from an online support group? 

I may find a group that’s right for me again one day, but next time I’ll do my research first. Here’s a list created from personal experience and research. (See below)

Pros

  1. Gaining self-worth or a sense of purpose
  2. Feeling less lonely or isolated, especially for those who may not have access to face-to-face support groups
  3. Getting support in times of stress, depression or anxiety
  4. Being anonymous allows you to vent or discuss feelings openly and honestly
  5. Staying motivated to manage your physical illness or mental health
  6. Gaining control of or feeling hopeful for the future
  7. Raising awareness of invisible illnesses, disabilities or a specific disease
  8. Getting practical feedback about treatment options, benefits or worker’s rights
  9. Feeling empowered by supporting others or working successfully in a team
  10. Accessible when it suits you, even in your PJs, leading to more participation

Cons

  1. Peer to peer groups are probably be run by unqualified members, who are also unwell – vulnerable people supporting other vulnerable people
  2. Increased negativity due to constantly discussing aspects of your illness or disability
  3. Interference on posts with unhelpful comments or incorrect information
  4. Written communication means that inference or tone can be easily misjudged
  5. Participation online may compound isolation from other friends or family
  6. A lack of control over medical advice, quality of information or criticism of health care services/professionals
  7. Reinforcement of negative emotions and negative remarks to other participants
  8. Disruptive group members may dominate the conversation, cause tension or create interpersonal conflicts
  9. Comparisons of whose condition or experience is worse
  10. Possible use the environment to prey on vulnerable members

Design

What is needed to create a good social support network? 

  • Those running the group must be very clear about what support is available and when.
  • Clear rules covering: disruptive behaviour, sharing medical advice and discussing medical professionals.
  • Conflict needs to be handled professionally.
  • A positive environment, that’s nurtured and monitored so that people feel listened to and that other members will show empathy and be supportive.

Do online support groups work? 

The disadvantages of online support groups are discussed by authors and healthcare professionals. Concerns about the quality of information, criticism of health care services/professionals and reinforcement of negative behaviours are certainly valid. However, this study. of online groups for those with physical illnesses, found that concerns about the risks of online support groups are not always justified.

In my opinion, there is increased risk in online peer-to-peer support groups, as those facilitating the group may be vulnerable due to their own physical or mental illness. This may make it more challenging to nurture a positive and safe space.

When looking for online support, it’s recommended that you ask questions before joining a group to find the right fit for you. If you don’t feel comfortable or safe in a group, put your own health first and take action. Online support groups aren’t for everyone, but remember that they aren’t the only option.

Finding my own way

I have my own network of friends online. We give mutual support through physical and mental illness. I also work 1:1 with a trained professional, via online video conferencing, to support my mental health. I wouldn’t have all of this support, without having been in the groups. I also have an amazing network of friends and family, who have shown that they’ll stick by me through thick and thin. I know how lucky I am to have that and I’m the happiest I’ve been in 4 years of chronic illness. I don’t know about the future, but for now; I’m done with online support groups.

Chronic Illness BloggersReferences

Pain Doctor-Finding help online

Mayo Clinic guide to support groups 

Mental Health America-Finding online support groups

Life as a bed-bound workaholic. #chronicillness

Stopping work due to ill health usually leads to a feeling of loss and purpose. For workaholics, giving up a career just adds to the grief of a previous life. If you’re also mostly bed bound; it’s almost impossible to give in.

On being a workaholic 

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I’d wanted to teach from age 5 and I loved it from the moment I stepped in the classroom. I was a workaholic, working nights and weekends, to try to make a difference.

Teaching is so much more than a job, you never stop thinking about some aspect and with you take on many roles.

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When I had my boys I worked part time, but was still working a 40-50 hour week. A workaholic is compelled to keep working and creates a life that’s out of balance. Read more here. Being a mum always came first, but I always felt the need to be doing something. Just a workaholic in another role; feeling like I couldn’t do either role justice. In hindsight; I know I gave both roles everything I could.

Becoming Bed-Bound

If you’ve read my story, you’ll know I had to stop teaching when I became ill. When we came to the mutual decision that I should be medically dismissed, I knew it was best for everyone. However, I struggled with the reality of having to bow out, from my bed, with no farewell, after the 14+ years I’d dedicated to my profession. I still wish I’d done more, but I’m proud of all that I achieved and that I had some influence on so many little lives.

We realised that becoming bedbound had a silver lining. I could now just enjoy the most important job I had and put everything I could into motherhood, without throwing life out of balance! We love that I’m more present and less stressed. Now I love hearing the key in the lock, anticipating my boys coming to see me.

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However, as a workaholic, even a bed-bound one with brain disease, I still needed to be DOING something. So I began making jewellery and soon discovered Conscious Crafties Marketplace The site was set up to give those with chronic illness, disabilites or their carers a sense of purpose again. You’ll find this statement on the site’s homepage.

‘A community of talented artists and crafters who are living a purposeful life by changing the way humanity perceives those living with Chronic Illness, Disabilities or Carers of those affected’

This amazing community has helped me connect with others who understand what we’re going through. I’ve made many true friends and am living a purposeful life. But, I’m a busy minded person and so volunteered to help Karen (the founder) run the site. Everyone tells me I do too much, but I thrive on helping others and love organising things. But I was juggling all of this and more, from bed, and it was beginning to impact on our family time, so something had to change!

Breaking Free

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Making the best of family time

I needed to break some of the bad habits I’ve developed over years of being a workaholic. But I have the best motivation; to bring balance in to my life. I’ve looked at my behaviour patterns and found I was spending far too much time on social media. I’m now slowly re-training my brain to know that it’s okay to rest!

Josie from Worry Free told me that ‘My JOB is to heal. By giving me a role/job of healing and rest, I have that all important role we crave and am now a resting workaholic! Such a simple idea, but so effective; I’m already breaking bad habits,  doing less and achieving more. Ultimately I’ll have more quality time to spend with my family.

 

Chronic Illness Bloggers

Self care: Are chronic illness warriors good at looking after themselves?

Are you a chronic illness warrior?

By that, I mean, are you the kind of person who:

  • Is an advocate for or is a fundraiser for a charity supporting your illness
  • Works or runs a business, even if it makes your symptoms worse
  • Has lists of things to do or achieve because you want everything done now
  • Is there for your friends who need support even on your worst days
  • Struggles to accept help-even not taking a medicine that helps your symptoms
  • Says ‘I’m fine’ when friends/family ask how you are, even when you feel awful
  • Has to be busy doing things that aren’t important; rather than prioritising
  • Doesn’t plan in any time to rest or even just sit still; let alone meditate

If you answered yes to some of these then read on:

We certainly need advocates for all chronic illnesses and doing most of these things likely makes you an inspiration to others. However, where do you come in your list of priorities? Your choice to raise awareness for others with chronic illnesses is awesome, but if you don’t make yourself a priority; you’re no good to anyone else.

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The bullet points above are the opposite behaviours to those in this diagram. I could have added many more examples, but I based it mostly on my own behaviours. In this blog post I’ll discuss my experiences, my understanding of ‘self care’ and the steps I’ve taken to try and put myself first.

Until last year I don’t think I’d really heard the term ‘self care’, now it’s fairly prevalent. I didn’t practice self care and I admit that I still revert to old behaviours occasionally. When I fell ill, my self worth plummeted and when I had to leave my teaching career; I fully lost any sense of purpose. I love helping others and raising awareness. Once I even raised money for 2 charities in the same month!

After 3 years of everyone saying that I was putting too much pressure on myself; I began to realise my self care was pretty nonexistent. Considering the severity of my symptoms; I knew this wasnt good. I was making my symptoms worse and my mental health was suffering too. You can read about a day in my life here.

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About a year ago, I joined a closed Facebook group at the recommendation of a friend. This was for women who ran their own businesses; started by an amazing lady who is a coach and hypnotherapist. This is Josie’s website. She sets a theme most weeks and then does a live session discussing aspects of that theme, such as; what we do to have fun or about asking for support.

She ran a course for us to choose one thing we wanted to achieve in 2017. I started, thinking this would be about my jewellery business. However, I soon realised that everything seemed to be pointing towards choosing ‘being kind to myself’. This was the first time I truly contemplated the cost of my actions. I suddenly saw that by being kind to others, pushing myself with my business and trying to prove I was still independent; was not only bad for my health, but was affecting my self worth.

So, I set my 2017 goal as ‘being kind to myself’, which you can read about here. I underpinned this with the steps I needed to take to reach this goal and even thought about who I needed to help me achieve this. I set up a Pinterest board with related quotes and some feedback from customers. I don’t set New Year’s resolutions, but having this structured goal, was much easier for me to follow. I wrote my goals out and kept the image in my favourites on my iPhone, so I could refer to it often.

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  • I started a diary and only wrote 2 activities a day, so that if a friend was visiting, I only wrote one activity for my business/blog/supporting others.
  • It took a while to add rest times as standard, as I already meditated. I lost my way a few months ago though, so now I write in time for meditation every day.
  • I let my friends support me and a rota of lovelies now put up the positives post in our Conscious Crafties (CC) support group. It’s one thing less on my to do list, but I still write my positives on it, so keep the positive interaction with others,
  • I’ve continued to build on my Pinterest board throughout the year although I needed a bit of a boost about a month ago, but am now back on track.
  • The step I’ve found most difficult is resting on bad days, let alone making this the time to focus on my achievements and ways to continue my self care,

About a month ago, I realised I needed a boost to get me back on track for my goal. I still benefit massively from Josie’s group but I joined in with a group I’d been added to; run by the Anne-Louise. You can find out more about her here. She’d just started a 26 day challenge about improving self worth. This was exactly what I needed, at exactly the right time. I even received a free support call a few weeks ago. This call and the 26 day challenge has kickstarted me back into thinking about self care.

I have now added these elements to my self care regime:

  • setting aside regular time to engage in positive interactions with my husband Joel, my boys and my friends.
  • starting a journal to record the gems of knowledge from the amazing ladies who run these groups, who are generous enough to share their message.
  • writing a ‘self care’ to do list as I process what has been said.
  • writing at least 3 positives each day in my journal, so that I can reflect on my day and revisit my achievements and good feelings on those bad health days.
  • using affirmations to increase my self worth. These are short, positive, statements that you repeat out loud to yourself or write down repeatedly. For example: ‘I’ve got this’ or ‘I am beautiful’. This is still quite new to me and at first I could only say them in my head. The aim is to say them in the mirror.
  • doing my physio exercises every day that I can. I’m adding in gentle yoga and Pilates techniques I already know, to improve my core and help me lose weight.

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I haven’t updated you since my last operation, but it has given me some relief from most of my symptoms. I’ve managed to do more and have reduced my oramorph. Sadly, It’s been harder than I hoped to get over the school holidays  (I knew I was doing a lot, but accepted there would be consequences). Frustratingly, I’m now a week in to a chest infection, but instead of waiting it out, I spoke to my GP when I first experienced symptoms; so this work I’ve been doing is sinking in, finally!

The results from my operation give me hope and I’m starting to plan for a future of less pain. I’m considering carefully how to merge Paprika Jewellery & Accessories  and my passion for helping others. I have lots of ideas depending on how my health improves. I still have lots to learn about self care, but I know my priority must be looking after myself, so that I can give the best of myself to those I want to help.

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Are you a chronic illness warrior? If so I’d love to hear your thoughts about this.

Are you able to ask for support?  Can you prioritise self care above all the amazing things you do?  Do you engage in positive interactions with others?

What could you do to address the balance between being a chronic illness warrior and practicing self care?

 
Chronic Illness Bloggers

Reflection after #brainsurgery; positive outlook with a hint of disappointment 

After my brain stent surgery in September 2016, I promised that I’d write an update. I waited initially, to see what would happen. Preparations for my online shops; including my Conscious Crafties shop took over. This amazing site helps those of us with disabilities and chronic illnesses, and our Carers to have purpose and stay positive. It is one of my biggest lifelines and has helped me stay up during these tough months. Then Christmas and the post Christmas crash happened. 

All of this has kept me very busy, but, I am prioritising being kind to myself in 2017. This includes spending more time resting and reflecting on my achievements. I have been working very hard to improve sales on my Etsy shop too, but I’ve forgotten how important it is for my whole family, that I look after me. Today I realised how important writing these blogs are for my health. They are a key expression of myself and free therapy. If I feel I can help or encourage others then that makes these blogs even more special. So, I apologise for neglecting you all and I will do my best to keep posting regularly.


Next week I have my brain surgery follow up appointment with my neuroradiologist (The Boss Man) in Cambridge. I am booked in for a CT venogram and cerebral angiogram.  We will discuss the impact the brain stents have had; based on test results and my description of changes and improvements. As I need to reflect anyway, I thought I’d share this with you.

Following surgery, we noticed an immediate difference in my cognitive function.When I returned to the ward, even behind the large sunglasses; my husband could see a difference. I continued to improve and almost felt like Laura again. I have been able to hold conversations again, instead of just information swapping and I now even ask how Joel’s day has been. My boys engage with me more and seek help to help resolve issues again. My GP has noticed that I slur my words less and my friends noticed a change too. One friend told me how she used to leave my house upset at how distant I had become. I’m so glad she could tell me this, even though it was upsetting; but we are both so happy to be properly connecting again.

All parties were unsure of the impact the stents might have on my pain levels. I’m not going to lie, this is the one thing I was and am still desperate to change. Despite knowing that this was only a pawn move in the game of chess, that is my health, the opposition (hospital politics), may just be caught out with the strategic moves we’re making towards their King; (jugular foramen decompression surgery). We knew it was unlikely to be a game changer, but I’ll never give up hope. 


I was hopeful and as the weeks went on, I noticed a small improvement in the severity of the constant pain. This was quite something after having to replace the large dose of naproxen I was on, with paracetamol; due to needing to take aspirin as a blood thinner. Although still in constant pain, I was going downstairs more regularly and coping better with the pain levels when I did go out; using less oramorph. I did and do still suffer heightened pain levels and insomnia after any activity. The insomnia drops me back into the pain loop, until I manage to reset my spoons. Going against my consultants’ recommendation, my GP decided that until the pain was more stable; I should continue to use morphine (a hint of disappointment).

Disappointingly (more than a hint), I feel I’ve taken two steps back in all aspects since Christmas. I’ve passed out a couple of times and been holed up in my bedroom with chronic fatigue, horrendous pain etc. I feel safe in my bedroom, I think; I can still make cards, jewellery and write poetry as a distraction from the pain. Since having the stents fitted; I’ve only had one or two vertigo attacks, however, the pulsatile tinnitus, phono/photo sensitivity and hyperacusis are all much the same. 


Writing this has made me reflect on our life before IIH barged it’s way in to our life, our old life where I would plan every minute of every day. Disappointingly, once one of you becomes chronically ill/disabled; you and your family unit have to make huge life adjustments. However, I wouldn’t change the life we had before IIH; other than spending more time together. In December, I watched my son’s last ever Christmas show from inside the hall. I am engaged in life again and I have seen a glimmer of hope; we may yet reach check-mate. So, my trusty earplugs, wheelchair and sunglasses will still be with me when I journey back to Cambridge next Thursday. These stents were never meant to work miracles, but there are so many positives I can take from this latest episode of my story. This is yet another piece of evidence that messing about with my jugular vein, really is worth the hassle.  I will let you know what The Boss Man says about our next strategic move.

 If you are new to my story, then you may wish to see where the game really got started, over a year ago, our first chess move, made in October 2015 Read about it here. Or like my Facebook page here for all my updates.

Reflecting on the year and setting goals for 2017 #spoonielife


So it’s the season when we start to look back at the year. I can honestly say that this has been the craziest roller coaster year of our lives. The highs have been unusual in their nature and have come tinged with massive low points. The lows have been monumental and the bits in between have been filled with laughter, love and gratitude.

You may remember that I don’t set New Year’s resolutions. Last year my aim was to try and come off of morphine in 2016.   I can and I will being the motivational words I intended to use to remind me of my goal. I have tried so, so hard all year and particularly after both my operations, and we all hoped each operation would help me get my life back a little. Ucfortunately that is not the case and I am on the same dose of morphine and still incredibly debilitated; most of my time spent in bed.  There is a little improvement but I have only had occasional days of not needing to use oramorph. I continue to wish this more than anything but have to be grateful of the improvements that have happened after each operation. This sampling of less pain has helped me to achieve more with my business and I am learning every day and feel incredibly proud of what I have still been able to achieve!

Health update:
I know many of you want to know how things are since I had my last operation in September! Sorry it’s been so long, but I have been giving the stents time to do their thing before updating you. Briefly, since my operation in September; I can now manage to go out of the house without needing oramorph just for the car journey. Therefore, I have made some progress towards my 2016 goal to cut out morphine. However, I have had to try and learn that I just need to accept that this is the situation I’m in and take the awful stuff so that I can live some sort of life as I’m never pain free! My cognitive function is much improved with many of my loved ones saying how much better my ability to communicate is and that I look a bit better. I have noticed that I feel more like me agai, which is an amazing feeling and although I still forget everything; I can have a proper conversation with my husband, I have an appointment in January to have a ct scan and cerebral venogram repeated to see what improvements there have been with the blood flow and the pressure measurements. I will update you more thoroughly then.


The Highs:

  • Finally managing to have 2 of the surgeries I need and noticing some small improvements with my cognitive function and tolerance to being in the outside world afterwards.
  • Being able to see my son perform his duet in his end of term play. (He was Romeo)!
  • My business growing well but still just about manageable.
  • Having the confidence to begin to sell my poetry and it becoming one of my best sellers; new lines being planned for 2017!
  • Getting a stairlift so that I don’t have to go through labour pain (or worse) just to get up/downstairs.
  • Completing my first ever craft fair.
  • Having a big joint party for my husband and my eldest; where I was able to actually listen to them play all together!
  • Making home improvements; I now have ramps to access the front and back of the house and creating a day room, so that I can spend more time downstairs.
  • Learning new business skills and joining a FB group to help me grow in confidence.
  • Losing some of the weight gained whilst bedridden and developing hypothyroidism.

The Lows

  • Having 2 serious operations; having a piece of skull removed and having brain stents in a operation with a very high risk of stroke; very scary decisions.
  • Being diagnosed with 2 new conditions: hypothyroidism and neutropenia.
  • Getting a stairlift (at age 38-now 39) was a massive thing to admit a need for.
  • Putting on lots of weight due to being mostly bed bound for 4 months.
  • Being dismissed from my job and realising I’m unlikely to get back in to teaching.
  • Our son diagnosed with migraine (huge guilt with this one).
  • Fighting to overturn my neurosurgeon’s decision that a stent would not help me.
  • Having certain friends and family members misunderstand that the operations will ‘fix’ me. IIH has no cure. I may get to a better place, but I will always have this condition. This is frustrating but I’m very lucky that this is only a handful of people.

The in-betweens

  • Having an amazing family that will always be by my side and are my reason for fighting. My 3 boys mean more than I can even try to express
  • Amazing friends that help us, are always there for us and understand!
  • Deciding to have monthly cream teas; including an amazing one at a castle for my birthday!
  • Belly laughs with my family (even though it causes great pain)
  • Difficulty finding new carers but I think we’ve finally found the right people.
  • Becoming officially self-employed.

My goal for 2017!

I recently joined a fantastic Facebook group where we are encouraged to go live. I have managed to in the group and after great feedback will be trying this out on my Facebook page; Paprika Jewellery and Accessories in the new year. I thought the group would help me to build my business but I quickly discovered that I actually need to build on myself..

So all of my highs, lows and in-between have come together and made me focus on my goal for 2017; I WILL BE KIND TO MYSELF. I have listed out the steps to do this and have listened to my friends, my husband and myself and realised that this is what needs to be my priority, I will post about this and the journey I’ve been on to get to this point in the new year. So, this just leaves me to say that I wish you all a very Merry Christmas and Happy New Year. I will see you in 2017 where I will be doing this!

You’re giving me a bit of a migraine and other wrong uses of adjectives…

Last week I wrote a piece on mental health and chronic illness and how they are often co-morbid. Whilst researching the piece I found this striking image and after trying to fit it in to the post, decided that it was addressing too many issues on top of the ones I was already addressing. However, it’s been bugging me ever since and despite having had a terribly painful night with little sleep, I need to get this bug-bear off of my chest.

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I really identified with the ideas in this picture and have often found it really irritating to hear people discuss mental health issues in this way; using adjectives to create the impression that somehow they are not responsible for their behaviour. It got me thinking…

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I bet someone that says “you almost gave me a panic attack” has never really experienced the frightening heart-racing, sheer and utter hysteria that comes out of nowhere for no real reason. I have. It’s scary and it’s debilitating and I’ve had it diagnosed by a medical professional.

Does someone that say “I’m a bit OCD mean that they’ve been diagnosed as being on the lower end of the spectrum? (I doubt it)  or does someone that say “you look so anorexic” to a young girl think of the power of those words and the actions she might take because of it?

Do you ever have a really bad headache and say “I’ve got a bit of a migraine?” Loads of people do. That’s part of the problem you see, and why there is such a stigma around migraine. A migraine isn’t just a bad headache. You shouldn’t say you have a migraine unless you’ve been diagnosed by a medical professional such as your GP or a neurologist. There are strict guidelines for diagnosing migraine, just as there are for diagnosing bi-polar or OCD (which thankfully I do not have) and by stating that you have a migraine without being diagnosed with them only adds to the ‘shame’ of suffering with them.

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Now, I’m very lucky in that I don’t have people in my life that don’t believe that I’m unwell; however as you know my story is complicated by this whole IH and restricted venous outflow malarkey. But so many people are stigmatised for having migraines when they are chronic and are affected by them for more than 15 days a month. As you can imagine, this leads to missed days at work, cancelled meetings and lack of social and family life. People that are affected by chronic migraine are often bullied in the workplace; lose friendships and sometimes even have family members turn their backs on them. The reason for this? Because they think they are making it up! This happens to loads of people in the IIH community too. I see it on loads of posts on the Facebook support group, where people have to try and convince their family that they are really unwell and not just trying to get benefits. I can assure you, that it’s hard enough to get the help you need when you are housebound, it’s not easy to blah benefits anymore!

I’ll be honest; I have lost a couple of friends along the way; people who I thought were good friends, some who I’ve even supported when they’ve been ill, but I haven’t lost many. In fact I’ve gained friends through support groups and strengthened many friendships, where true loyalty and kindness have shone through! And, I don’t know where I’d be if it wasn’t for the school mums community coming together and offering to help out with lifts back from school, play dates in the holidays and even dropping in for a cuppa to keep me sane too!

It’s hard to be around someone who is ill; I get that, I can be boring when I’m tired from all the pain and  medications. I can be quite funny too though from some of the medication! I say the wrong words, I repeat myself ALOT! I forget what you’ve told me and ask you the same questions or forget to ask you about something important. And I’ve even managed to send my ‘amazing friend’ a weird voice message without even knowing. However if I’m depressed, (which I have been diagnosed with, alongside anxiety) then I can be even more difficult to be around. I guess that is why we find out who our true friends are when we are ill. There are some ideas of things to say to people that are depressed such as in this article.

I don’t normally write with a negative attitude and I hope that this post isn’t too negative but sometimes things just need to be moaned about; not because they’re happening to me but because I’m being an advocate for increasing awareness about migraine and IIH and life with chronic illness. So please don’t use mental health conditions as adjectives, please don’t say you have a migraine unless you’ve been diagnosed by a medical professional and please don’t say these things to someone who is chronically Ill:

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Everyone I have met who has a chronic illness, be it IIH, chronic migraine or any other condition; fights harder than anyone to just get up in the morning. They have usually tried every ‘cure’ or tried to change their habits or their environment if they can. I know because I have tried more than you can imagine and none have made a long lasting difference for me. So as a last word on this post, I just want to say that whilst you might do things that do give someone a migraine, unfortunately we sufferers, have to try and control our own triggers and can only ask you politely to not wear that perfume, or talk so loudly or to keep the blinds closed. However, if you do hear us say we that we are in too much pain to come out with you or to go to work, then if you just say that you believe us you will make our day one step easier to get through.

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Thank you for reading this post!

Mental illness-the light at the end of the tunnel??

With every story of chronic illness comes a side order of mental illness. Some people, of course handle their situation better than others, managing to hold down a job and healthy relationships etc. For some however, the struggle to find that ’light at the end of the tunnel’ that everyone keeps talking to them about, from the minute they’re signed off with a medical certificate for more than three weeks, becomes a constant battle with lining up the pills in pretty patterns next to the vodka bottles. Of course there are many of us that are in between the two ends of the spectrum.

The past week has ‘Stop the Stigma’ week; a week aimed at raising awareness of mental health issues set up by a small group in the US and it has spread via social media. I’ve decided that now is the time for me to write this blog although it has been fluttering in the cobwebs of my mind for a while. https://www.facebook.com/pages/Mental-Health-Awareness-Week-2015/1392190864384089

This will not be an easy blog entry to write and therefore I want to warn you now that it may not be easy to read. If you are a stranger, then I hope it makes you stop and think about someone that you do know with a chronic illness and maybe make you reassess how you may respond to them or interact with them. If you’re a friend or family member then I’m sorry if anything I write in this blog is upsetting; however, the point of this is that by sharing my story, my vulnerablity, that more awareness of mental health issues are raised. It will take courage to write about some of the content of this post, however because I know my children can google this blog anytime they want, I will have to use some self censorship. I am terrified of what starting this blog is going to bring up and how I’m going to handle it but for now I’m going to sleep on the ideas that are starting to formulate……

Firstly, let me say that I am not an expert in mental health issues, nor have I suffered particularly badly with them myself. I had a brief spell of post natal depression where I suffered with panic attacks; these were diagnosed by the midwifes,  as the attacks started whenever I left my second son in SCBU and went away from the hospital, even for the briefest time. The diagnosis was a relief, because they thought it might have been a pulmonary embolism due to complications after delivery. However, after we all got home the symptoms continued and worsened to the point of my GP immediately referring me for counselling. I developed a good relationship with my counsellor and her technique worked and I was soon cycling to the appointments and rebuilding myself. I was given the standard NHS 6 sessions but that was enough for me to get my life back on track so that I could look after my children and be a happy wife and mother again.

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That was my first personal experience of mental illness but I grew up around it even though it was something that wasn’t really discussed. Well, I remember being told about things that had happened, those things still haunt me now, but not understanding them. I won’t go into these events as I don’t have those people’s or their families consent. I can however tell you that I remember some incidents making me feel like I should be able to do something to make it better or ‘fix it’ or that it was somehow my fault. As I’m sure you can imagine I am now a ‘fixer’ and have a very high tendency towards feeling guilty. Interestingly, a counsellor I saw at the beginning of this 16 month long nightmare of a migraine/headache/iih thingy, told me that guilt is “being angry at yourself because you can’t be angry at anything or anyone else.” I still feel guilty. I probably even feel a bit guilty that I never went back to see that counsellor. The thing is it left me in bed for 3 days afterwards in agony from the journey (25mins) and the talking (1hr), so I deemed it a pointless exercise in the journey to my recovery.

So you can see that I have already experienced counselling and have found it a useful tool. I think that everybody with any mental illness should reach out for help because there is a lot of help out there. I am very lucky, in that my GP practice, has a counselling service that runs from it’s practice and that because I am a teacher I also can access counselling through my work occupational health support agency.

However, since my first encounter with the counsellor I decided that I can do this without any extra help! My support group friends cannot believe that I am not on anti-depressants! You see, most people that experience chronic illness, also suffer from mental ilnesss. In fact, it is a common belief that migraine is actually caused by stress. There is actually not enough evidence to know the cause of migraine, as despite it being in the top 4 of the world’s most disabling conditions, it has very little money spent on it to research causes and cures. Stress can be a trigger, just as a post stress comedown can be (this is one of mine) as well as chocolate, caffeine, tomatoes etc… In fact, anything can be a trigger. It is an individual thing.

There is also very little research done on IIH but for a different reason, this time, because it is so rare! However, on forums and the support groups, it is clear that most people find that stress raises their pressure and therefore increases their pain and other symptoms. In fact, crying and laughing often come up in forums on migraine and IIH sites as discussions about how these acts can increase the pain. I have looked on the internet for research with regards to stress and IIH and cannot find any. I understand it to be the physical impact of raised blood pressure, increasing stress on the vessels to the brain could worsen symptoms of IIH.

So you can see that there is a link between worsened symptoms due to increased stress but what about stress causing these conditions. Well as I said, it is unknown what causes migraine and it is the same with IIH. IIH stands for Idiopathic Intracranial Hypertension and Idiopathic means ‘of unknown cause’. However, many people both professional and otherwise still believe that stress causes migraine and IIH. When I was first unwell with migraine, the first neurologist I saw suggested that working 4 days was too much for me. However, a couple of years beforehand I had managed to work full time with low level migraines and in a school where I was very unhappy and cried most days on the journey in to school. (I probably should have been signed off with stress but still….) I soon left the school and went to a school where I was really happy and that’s when the migraines started to get worse…. There’s no telling is there. Anyway I soon had to encounter an Occupational health assessment. I spoke to the occupational health nurse over the phone; her exact words were “you couldn’t possibly be off work for 3 months with just a headache”! At this point, I’d been diagnosed with migraine and that had been written on all but my first sickness certificates (the first said headache). She really tried very hard to diagnose me with depression in that phone call, telling me that my voice sounded monotonous and that I didn’t sound ‘like a teacher’?? If I had been depressed, I would have just admitted it, it’s not something to hide and that’s what I told her but she took a lot of convincing that I really did have unbearable headaches that meant I couldn’t walk for more than 5 minutes and that was the reason for me not sounding full of the joys of spring! My neurology nurse told me that I should “talk to my GP about my mood” when I burst into tears of frustration when yet again I was told that I needed to give the pills a bit longer to work (surely 6 months is long enough to know that something is not having a positive impact?)  I have even experienced this attitude with the headache specialist, whom I begged for months to see, she suggested that even though I wasn’t working there was still a lot of stress at home; my children and all the housework. I couldn’t believe it. I had fought so hard to see this woman and her advice was to not get stressed out by doing housework (which Joel was doing at the time as well as working anyway); my kids (who make me want to get up and fight every day, who tell their friends they have to be quiet when they come to our house and are always complimented for being the most well behaved kids our friends have looked after)! She also told me not to eat chocolate, cheese or caffeine. Do people seriously get all the way to seeing her and not have tried that one already???
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On the support groups I’m on there is often talk of depression and cries for help. It can be quite scary when someone writes that they are going to end it because they can’t take the pain anymore. The thing is we all get it. We all know what it feels like to want to get rid of that pain so badly we’d do anything. Of course, most of us would never do it, but that black dog of depression looms over us and invites us to take the easy way out. However, luckily those support groups on the whole are thereto help is get up and fight each day. The groups that have people constantly posting photos of their operation wounds and groups with passive aggressive members in are now not on my follow list. I simply cannot be dealing with groups that are constantly negative. I need to be in groups that support each other through bad times, but will them through the good times and applaud every victory each member has! A group where a member wants to post that they have had a pain free day is what I call an awesome group! We should be there to will each other on to health but also recognise that everyone may not be able to get back to health and be there to support them just as much.
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Now, this is where I need to point out that I have never thought through an end plan ever! My husband and children are too amazing for me to be drawn in by those thoughts for long enough to actually plan anything. But, I have wanted to just get that pain out of my head somehow. When the pain you face almost daily, comes close to the same pain you suffered in childbirth then yes, you want an end! In childbirth, you get gas and air and an amazing baby and a heap of endorphins; I just get never-ending, vicious, ice-picking, tunnel-bearing, vice-busting pain!

So, how do I make sure I’m not constantly brought down by the car-crusher I like to think of as my evil nemesis! It’s there with me constantly, so I have to go into battle mode, no sleeping on my laurels. And it’s not just me. My family are affected too, aren’t they? We have to raise an army together. Luckily, we’ve always been a good team. Luca is the ‘defender’: He checks on me, he stands at the top of the stairs and coaches me up every teeth grinding inch of pain that is called the nightly mountain climb. He has embraced our family positivity jar and can always think of something to say and write when we share our positives at the end of the day; we don’t always write them down but when I dip in the jar I often pull out one of his that says ‘giving mummy cuddles’. Zeke is the ‘logistician’ always ready to suggest an easier way of doing things. “Why doesn’t mummy go upstairs now, when she’s less tired?”. He likes to know the facts of what is going on; he took in everything on the detailed skull picture we showed him when we tried to explain my warped mind and he often asks when the operation will be and what will happen. He likes to know the facts and finds it hard that we can’t answer all his questions. They have both got music to keep inspiring them, swimming to keep them fit and have been registered as young carers, so will be able to attend meetings and days out in the holidays with children in similar situations.
Joel is the ‘commander’; bold and fearless. He has taken on running a household, being my carer, being a fabulous dad and still holding down a high powered job with almost sheer ease. There have been a few bumps and, if it hadn’t been for Nina coming in as ‘adventurer’ ready to put her hand to new things and throw herself fully into the McKee family, we may have had a crumpled leader but he still holds his position well and keeps his sanity through his music. He has joined a band that gives him his own creative time and space. Now all we need is to get him back out on that bike! I am a bit of a ‘mediator’; often taking that role within the family and coming in to do my parenting bit when I can, often when Joel is at the end of his tether and when I should have started helping earlier. I have found new things to interest me and causes to fight by joining Mission Migraine and sharing my story for awareness. That has led me to realise the power of the internet and I share my journey about suffering with migraine and being diagnosed with IIH through this blog and more recently by starting the twitter account for Mission Migraine @migrainemission. Creatively, I have started to build myself back up again by beginning to make jewellery again. Exercise wise, I still love my yoga and Pilates and meditate daily and try and do simple exercises in my chair or bed when I can. Personality types taken from 16personalities.com

As you can see, we do a lot of positive things to try and keep healthy minds individually and as a family but we are all aware of the need for someone else to talk to outside of our situation if the need arises and I may talk about that in future blogs. We have done all these things as a natural process but I was interested to find this poster when searching for pictures for this blog on how to have a healthy mind.

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Yes, we are living in survival mode but we are gradually rebuilding who we were before this illness came to join the McKee household. I want to say that my illness does not define me and I hope if you have a chronic illness that you can say that. Unfortunately, they do become all consuming when they take over every aspect of your life and relationships. I am gradually beginning to rebuild the Laura that was here before this illness came in and shook me to the very core, however, this Laura will never go back to who she was before. I think that that is a good thing. I have learnt so much about life, relationships and people through joining support groups, developing friendships, exploring empathy, deepening understanding of who I really am and who I want to be (I’ve had a lot of time to think), and developing love on a far deeper level than ever before with my husband who has guided me through the hardest moments of my life so far. All I can think is that this stands us in good stead for what is to happen in the coming months and that we have all these support networks in place already for when we need them the most.

Thank you for taking the time to read this post.

A Smile is the prettiest thing you can wear! 

I’m often asked how I manage to stay smiling whilst I’m in so much pain. There is only one answer for that and that is my family. My best friend and my rock; my husband Joel, and my two amazing children, who have had to learn to adapt and change with this monster illness just as much as I have. I love this quote below from the very wise and inspirational Maya Angelou. I have to say that even on a bad day, like today, when I’m stuck in bed; I still have a smile for each of the three loves of my lives.  

We went out yesterday you see; we had family fun. I took maximum oramorph and popped in my earplugs and we smiled and laughed as we did normal stuff together. Even me being in the wheelchair and/or using my stick seems normal now. I posted some photos on Facebook and had so many lovely comments about our lovely smiles. I have such immense support from such a wide community on Facebook and they all know by now that I smile through the pain. In fact; one of Mission Migraine’s awareness campaigns was pictures of us smiling through our invisible illnesseses; so I’m in good company and am buoyed on by my fellow missioners!  

As I am writing this blog entry, a parcel arrives from my fantastic aunt and godmother! It’s our Christmas presents, just in time for Easter! She may be a little crazy😜 but has always been my inspiration from a young girl. We developed a special bond when I was a teenager and we have kept that going since; our relationship has become even more poignant now and although we don’t speak as often as I’d like; we both know that we are there rooting for each other. She has suffered with chronic illness since childhood and has always dealt with it with verve, dignity and humour! She has always amazed me at how she can sparkle like a gleaming diamond after all the bashes and knocks she deals with. However, she goes beyond that and helps others, inspires youngsters and remains a confidant for so many loyal friends (of which I now also think of her)!   Sue Rush: this one’s for you! 

Anyway; my present was a ‘happiness kit’. Talk about perfect timing! I have put it in the pot next to my bed with my broken angel and precious stones and my ‘Never Give Up’ scroll! That way I can look at it every day and remind myself of yet another reason of why I should stay happy and keep smiling through the pain.

I know I put lots of quotes into my entries but there is one that stays in my head all the time. That is ‘that you can make yourself miserable or make yourself happy, the amount of work is the same.’ A friend I’ve met online whom suffers daily asked me the other day “why don’t you cry all the time?” My answer was that it simply is down to the fact that I get used to living with a certain amount of pain, it hurts more to cry and that I am so lucky to have such a special relationship with my husband who happens to also be my best friend! If I didn’t have him or my children to inspire me; I would cry a lot more. But it’s more than that. I have so many friends that have been loyal to me  and haven’t turned away from me because of my illness, (I’ve lost a few) like many do to so many chronically ill sufferers. Many of them even call me an inspiration; which I find hard to understand and have been questioning a lot in the last few weeks. I’ve forged stronger friendships with people who were already friends but, now that they can let themselves into my house (using a key safe), have seen me in my bed looking pretty bloody horrendous and have ended up having to make their own cuppa when they get here; I have a whole new set of best mates. And then there’s the amazing friends I’ve met online in support groups. The friends who don’t just constantly post pics about surgery or moan about certain doctors or just complain about what is going on in their lives. Oh no! I’ve met people who completely understand 24/7 pain, feeling like they are on a boat constantly and who also wear shades indoors! They tell me off when I need to be pulled out of the rabbit hole (oh yes-I’m not smiling constantly; that would make me a maniac!); pat me on the back when I’ve rung back the scary doctor’s secretary; send me virtual hugs and get well wishes on the really bad days; call or FaceTime me for a giggle or reboot; share with their friends what I’m writing here and most importantly support me every single bloody day I have to get up and face the world, again, in pain, still waiting…… 

They make me appreciate that I still have that day to share with my friends and family even if I am in pain. Because there is always something positive in every day and however bad each day is, you can dig deep and find that one tiny thing to be grateful for; that one thing that will make you smile! I’m not trying to be an inspiration; I’ve never set out to be one and I don’t see myself that way. I am so shocked when people say it to me still but I think that I am starting to learn that the reason people feel the need to say this to me is; that I show strength (which I remember my reiki practioner asking in early 2014 what I’d learnt about myself through going through the pain and I’d said that I hadn’t known how strong I was); positivity; realism and gratitude. All I want to do is share those things with others that are hurting and help them to fight through their pain and illness and to raise awareness of others hurt/illness be it migraine, iih or even other pain related illnesses. I only ever share photos, quotes and information to raise awareness; not sympathy!

So if you’re reading this today, whether you’re well, ill or in pain (chronic, or you’ve just stubbed your toe); think of something that will make you smile. Something someone said or did; something you achieved; a cuddle someone gave you or a smile someone passed on to you. At the end of the day, in this world; there is always someone worse off than you. They might be sitting next to you on the bus or they might be on a different continent but we never know the journey that other people are making and we never know what someone else might be going through. Let’s face it:

OR if you look at it from your own point of view and you are ill or well; still push yourself to the limits of what you can handle. Don’t sit at home waiting to feel better, be wealthier or more ready. Life is too short. Yes, going to Somerset for 3 days may have put me in bed for a week but I pushed myself within (maybe) my limits and made amazing memories and although you may not call it crazy; it was pretty ‘whatever’ when I feel like I do. I still don’t know my own limits; I still did too much yesterday and ended up nearly puking on the way out of Sussex Stationers like some drunk old bird who can’t control herself! But a few diazepam and a bit more oramorph later and a whole day of short chunks of writing you have a blog entry. One hell of an achievement I’d say. 😃😃😃😃 (don’t I just make you sick?) 😉 don’t wait to do that bungee jump, dye your hair grey or make that visit to see your Nan!

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https://www.facebook.com/Tearsofstrength

Writing to ease the pain

Writing has always been my passion. I love words. Writing this blog has helped me to start to get that back and it has helped me find something that I CAN do despite the 24/7 pain. Long before all the pain, I used to write very differently. I used to write poems and have even had a couple of poems published in large competition style compendiums. A great achievement, if you only look at that in the naive context as I did at that time, and great to inspire children to write as a teacher later on in life. Many primary teachers struggle to teach poetry as all they focus on is rhyming or haiku. I loved teaching poetry and will always love to engage young children in spoken word, rhythm and rhyme. Well, during teenage and university years, when I was troubled I guess, I wrote a lot of poems and still have those notebooks now. My husband did an English degree and has always encouraged me to carry on writing but I’ve always been too busy working or being a mum; I think I may have written the odd one or two. Well, I’ve noticed that pain seems to bring out the poet in many sufferers. Some produce greater works than others of course; but, if writing helps that person to work through the cacophony of emotions that linger alongside us as we journey through chronic pain, then that is a great thing; whatever the outcome! I have shied away from writing so far, even though there has been a push for awareness poems in one of my support groups, mainly because I’ve just not been motivated to write. I don’t want to write a somber ‘this is hell’ style poem; one picture can tell more than a thousand words most of the time. I don’t want to write about how awful the pain is in an obvious way. That’s not how I write and therefore I didn’t feel inspired to write poems to raise awareness. I am sharing my poem with you today because I wrote it without the intention of it being about pain. Nor did I write it for raising awareness about any conditions I suffer from. I wrote it about hope. HOPE. H.O.P.E.image

Anyway, poems written to raise awareness are great and I’m not belittling that at all. I’m just trying to explain why I didn’t write for that purpose then but I do now. Mainly, I just wasn’t inspired! This poem was inspired from a visit to a gem shop in Glastonbury where I found a broken angel. She now sits in a bowl next to my bed with a few other precious gems and a Scroll; printed with The Dalai Lama’s words telling me to NEVER GIVE UP! Hopefully this is the start of me writing poetry again as well as continuing to blog. Whatever happens next, I know there is Hope and I know to Never Give Up!

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