#IIH life in the slow lane!

I’m finally posting an update after my 2nd surgery, nearly a year on, so thanks for your patience while I’ve been in the slow lane! I’ve been on a rollercoaster journey with my IIH (Idiopathic Intracranial Hypertension) over the last year.

WHAT’S BEEN HAPPENING?

In June 2017 I had my second skull surgery and 4 weeks ago I had the same operation on the left. They have removed the C1 vertebrae mass on both sides to make space for the jugular vein that was squashed; preventing blood draining from my brain. I use a plumbing analogy to explain this. If you think of the veins as the pipes, you’d remove the blockage at the top first, because if you remove the top blockage beforehand, you’ll just create a bigger blockage below. This is how my surgeons work, slowly and methodically to ensure that all surgeries are exacting.

The surgeries have been difficult for us all. I’m not scared of surgery, but I worry about how my boys and Joel will handle the added pressure. This time, I’ve asked for help from the wonderful Josie Brocksom of Worry Free who gave me strategies to help me deal with my concerns and trust that Joel would be able to cope with the additional pressure, which of course he has. She has also taught me that it’s ok to rest, so this time I have let myself stay in the slow lane so that I can heal!

I’m lucky enough to be covered by private healthcare. One of the biggest perks is having a private room of course, but I love the food too! Yes, really! I’ve been waiting to show you this photo of the yummy lunch I had the day after my surgery last year. Just look how good that was! I just had to order the same this year too!

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Before I continue, I wanted to address a question Joel and I get asked so often:

HOW DO WE KEEP SO POSITIVE?

As with everything in life, we have some choice. Of course, I have no control over how the IIH affects me, apart from my pain relief. However, I do have control over how I manage to stop my high pain levels, from affecting my mood. Myself, Joel and my boys also choose how much we let IIH affect our own lives and time together.

I’ve been able to share over 20 years with my best friend. Joel is affected by IIH just as much as I am. However, amongst experiencing all my of pain, constant worry and looking after us; he works incredibly hard in a tough job. He is also an advocate for carers through the Family Matters team across the whole of Lloyds Banking Group! He keeps me going and picks me up when I fall. He makes me laugh til it hurts and ensures that the children have emotional, physical and comical needs met. I couldn’t ask for anything more and I know I’m lucky to have him by my side at every step.

I can’t say all is peachy, as of course it’s not: I still cry, get frustrated and have meltdowns-I’m only human! Joel and the boys keep me fighting this disease and get on every day. We’re open with each other and share our experiences with others who just get it.. We also have the opportunity to raise awareness of how to stay positive when chronic illness affects a family, and we are both very proud to do this!

THE SURGERY

When the wizard has (my ENT specialist surgeon) removed part of the C1 vertebrae, he gets as close to the nerve as possible; without it being dangerous. This is only done for the few like me, by the team in Cambridge. They’ve developed procedures to reduce unwanted side effects and they explain everything so well. They are now developing other studies and sharing their findings with the medical world.

I was only in overnight both times and have a drain in which helps to limit the chance of having unwanted side effects. These are shoulder weakness, trouble swallowing and a hoarse voice. It’s too gross to show, but here are my post op selfies!

2016-feeling warm and puffy!

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2017-Looking amazing on oxygen all night due to low SATs

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The operations have both been successful. The scans show that the jugular vein is no longer under pressure and the blood can flow freely through the veins there now.

NEXT STEPS:

During my pre-op testing (ct venoplasty/venogram), my neuro radiologist found arachnoid granulations pushing on my stent and narrowing the flow of blood. These are normal lesions found in the venous channels that allow the CSF to flow into the venous channels. These are rarely found in the transverse sinus, however, and unfortunately they are growing around and through the stent in the left side. This explains why I started to go down hill again a few months after last year’s surgery, so I will need a procedure to stretch the stent and push the granulation back.

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Unfortunately, I also need a stent in the right transverse sinus, so I have been referred back to the neuro radiologist following our check up in Cambridge yesterday. It’s good to know that we are moving forward surgically and it means that I can focus on my goal of reducing the morphine even more. The transverse sinus is part of the venous system in the brain and allows the blood to drain from the back of the head. If you’d like to know more, I have a reference to this medical article here.

Last year’s surgery was such a success that I was able to travel abroad, have a 40th birthday party and generally spend more time with my family. This is my priority and as I was able to reduce the dose of morphine I take in the morning a few months ago, I now need to get back on track with that as I come out of the other side.

I’ve big plans with my family this year and although I always suffer, it’s so important that I try and enjoy my life as much as I can. I don’t know how much I will recover from this disease. This means making the most of life NOW! This is why we decided to visit the Imperial war museum yesterday on our trip to Cambridge. This was only my second trip out of my bedroom since surgery. Although I only managed half the visit in the museum and the other half lying down in the car, I’m amazed that I was able to do tbis and even though I’m exhausted today, I’m still finishing this blog!

As it’s only a month post op, I can’t say much has changed; although I haven’t passed out since, which was happening weekly beforehand. But, I feel like I’m turning the corner now and have every faith that symptoms will continue inproving quickly, as soon. I had such a positive response from last year’s surgery,  I feel positive that I will continue making baby steps towards achieve my goal to reduce my meds and increase time with my loved ones. So, I’m still in the slow lane, but I’m happy here for now whilst I carry out my job of healing, and continuing to rest!

Please check out my social media accounts and stores if you’re inspired:

http://www.facebook.com/Tearsofstrength

http://www.twitter.com/happyiihgirl

http://www.instagram.com/paprikajewellery2

http://www.pinterest.co.uk/PaprikaJeweller

SHOPS:

http://www.etsy.com/uk/shop/ThePaprikaJewellery

http://www.consciouscrafties.com/Crafties/paprika-jewellery-accessories

 

Chronic Illness Bloggers

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I finally watched Unrest and…

Great post-I’ll be watching this soon!

A LIFE LESS PHYSICAL

If you’re involved with the chronic illness community it’s likely you’ve heard about Unrest, a new film about Jennifer Brea’s personal journey with Chronic Fatigue Syndrome. The documentary, which won a Special Jury Award at Sundance film festival in 2017, follows Jennifer as she learns to cope with CFS/ME and reaches out to fellow sufferers online to try and understand a condition that has baffled medics for so many years. It’s gained a huge following and has led to discussions in parliament about the treatment of chronic fatigue patients within healthcare systems across the world.

It’s now available on Netflix and well worth a watch – but possibly not for the reasons you might imagine.

Fort Worth Business Press Image via Fort Worth Business Press

If you don’t know anything about invisible chronic illnesses (which I’m guessing isn’t the case, based on the fact you’re reading this blog) then I recommend Unrest. If its…

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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

Dear Fatty

Love this inspirational woman!

The Hippy Geek

(Yes, I know I shamelessly stole the title)

New (academic) year, new challenges. But this year marks a big one and a massive personal challenge for me. If you’re reading my blog, then you’re probably already know about the fun & games I have with Ehlers Danlos Syndrome – TLDR; it’s shit & cramping my style, but this month marks the 1 year anniversary of fracturing my spine and just over a year since my hearing dropped to unworkable levels. Life went on. But without my beloved racing that was an outlet for lots of rage – but now I’m back! Wonkier, in more pain, and with an extensive arse (the image below is my “thinspiration” – a combo of being stationary & evil painkillers has wrecked my weight).

So, with new work challenges I knew that I needed to build in some head space and get back to racing…

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This is a disabled parking bay…

Whilst I’m mending from my op, I thought I’d share this incredibly well written and very important message about parking in disabled badge holder spaces! I will be writing about this myself soon!

The long chain

This is a disabled parking bay. There are four of them at my son’s school. They are close to the school entrance and they are wider than normal bays. Doesn’t it look inviting?

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This is my son Benjamin’s blue badge. I had to apply for it, and pay for it. Many disabled people have to fight for it. It entitles me to park in the disabled bays at my son’s school (and anywhere else) when I have him with me and he will be getting out of the vehicle, or when I will be picking him up and putting him into the vehicle.

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These are four of the cars that were parked in the disabled spaces at my son’s school today. None of them is displaying a blue badge.

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Maybe their drivers aren’t aware that although this isn’t a public road the school still enforces the blue badge scheme? Maybe…

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IIH and skull surgery: part 2 #IIH #brainandspine

Skull Surgery

It sounds much worse than it will be. This is the next step in of my treatment plan. I have Idiopathic Intracranial Hypertension (IIH) and this is my journey,

To prepare for surgery; I’m resting; well, resting as well as anyone with needtodoitis can! I am on strict instruction to allow my body to be in the best condition possible, for my surgery on Thursday (15th June 2017). I’m also owning up now, to not fully understanding the recommended medical document, at the end of this blog. 👀

Firstly, if you are new to my blog or need a recap please read this post,, written after my first skull operation; a Styloidectomy. (I just re-read it; I’d forgotten some of this-yikes)!! Please be aware that there’s a surgery scar in case you’re squeamish.

Background

In January 2016; I had a Styloidectomy; the removal of the bone behind your ear; called the Styloid Process (red area on the diagram). My right Styloid process was removed by The Wizard; my ear and skull surgeon and one of the magical team I’m under in Cambridge. I have constricted veins in my head, mainly the jugular vein; affecting blood flow from my brain; leading to a build up of pressure in my skull. Following that op, I was able to have a two way conversation again; after two years of complete brain fog. Everyone noticed a difference, but I was still in 24/7 pain and unable to walk unaided. My memory was still poor and I still struggle with words,

img_7354At the time, we thought that the next step was to have a stent placed here. Due to being one of the patients to have these procedures; immediately after the trial group; I have to be prepared for rules changes. I had stent surgery of the left transverse sinus in September 2016, whilst they waited for their paper to be published. This is now available and they are  the first team in the world to use these methods, for this rare brain condition. You can find out more about all of this, in the ABOUT/BIO drop down menu: what is IIH?  

I’m lucky enough to benefit from what they have learnt in the trial. They found that placing a stent in the jugular vein, after removing the Styloid processs; was less effective than expected. But, once a stent is in place it can’t be moved; so patients often had the mastoid process removed, to relieve some of the pressure on the vein.

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Mastoidectomy

This led the team to the conclusion that it would be more effective to perform a mastoidectomy before stenting here. This would make room for the jugular vein to take the stent more precisely and possibly mean that stenting wouldn’t be necessary. I’ve highlighted both the Styloid and Mastoid process, in the diagram above.

I have only found articles about mastoidectomys for other conditions; as both of the surgeries used; aren’t new procedures. What the Cambridge team have done, is to think outside the box and are use tested surgeries in new ways; helping IIH patients with restricted venous outflow. I am referencing one of the clearest (and least scary) articles, to try and explain the procedure; although this is for other conditions.

This procedure is usually performed when a patient has: had infections that have caused hearing loss, tumours or for patients being fitted with a cochlear implant. The mastoid cells and process form part of the temporal bone. A mastoidectomy traditionally removes an area of mastoid cells; which which has a honeycomb structure, due to bone being formed around air pockets. However, the mastoid process is below this area; highlighted in the first diagram. This bone is denser and  connected to the C1 vertebrae, therefore attached to the top of the spine. This video explains the anatomy of the C1 vertebrae. Cervical Spine anatomy

There are many veins, nerves and muscles attached to the C1 vertebrae, which is essentially a pivot; allowing us to extend our neck and nod. The mastoid process is the outer part of the skull; attached to the occipital area and provides attachment for many muscles. Thankfully, I have complete faith in The Wizard and he’s assured me, that if anything; he’s conservative with how much bone he removes. He will drill the bone just enough; to make room for my jugular vein to work more efficiently.

Risks and Further surgery

It’s a similar surgery to the styloiectomy and has the same risks: which aren’t life threatening. There’s a possibility of having a weak shoulder/arm or a hoarse voice  following surgery. Despite the serious nature of the operation; I will be only be kept in overnight; unless there are complications. I will have a drain in overnight; used to   try and prevent side effects. In the future, I may need a stent here; it’s been the plan since the start, after all; but we have to focus on one step at a time. If you wish to know more about the anatomy and a typical mastoidectomy; please read this article

I’m sure I will be back very soon with some amusing anecdotes from our little adventure. Thanks again for stopping by; please don’t hesitate to ask questions. Remember though, that this team are the only team in the world treating patients like myself in this way; so I may not know, or be able to find the answer.

 

Chronic Illness Bloggers

#Migraine and #Headache treatment often requires more than one approach. http://poht.info/2qNtzdg #MHAM #MHAMSMC

Welcome to Day 6 of Migraine and Headache Awareness Month.

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Since I was officially diagnosed by a neurologist in 2009, even beforehand, when I was lost with misdiagnosised and undiagnosed symptoms; I have opted for treatment other than that suggested by my past and present neurology teams. I would like to discuss the most effective treatments that I’ve personally experienced,

I have used the treatments below, alongside prescribed medication; since being diagnosed with migraine in 2009 and Idiopathic Intracranial Hypertension (IIH) in 2014. Please seek medical advice before trying/using any alternative therapies. They should be treated as complementary therapies and not replace prescribed medications. 

Diet, Vitamins & Minerals: 

I’ve tried vitamin and mineral supplements to help my symptoms, since diagnosis. We all know that we need these to stay healthy and it is usually the first thing we explore when we have chronic or recurring illnesses.  I have been prescribed supplements by my GP (family doctor), nutritionists and kinesiologists (I will discuss kinesiology later), since my migraines started; 20 years before diagnosis. Read this to find out more about whether we need them in our diet and who might need them.

Personally, I’ve had the best results from supplements with a high dosage; prescribed by trained therapists. I’ve tried more than I can remember, but my go tos are Zinc, EDA (fish oils) and Ascorbic acid (pure vitamin C). I also use a probiotic called Lactobacillus Sporogenes; after a course of antibiotics.

I have had varied success with diets and supplements; some causing a dramatic impact on my headache frequency and pain levels. I was even able to continue working, without increasing my prescribed medication. However, since my IIH diagnosis and the debilitating symptoms; making it impossible to work, I have less money, so use a good quality multi-vitamin and prescribed vitamin D tablets,

Kinesiology and Cranio Sacral therapy:

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I have had great success with kinesiology as a complementary therapy. There are different methods of kinesiology used around the world; deriving from acu points in Chinese medicine. I have experienced applied kinesiology, which is complex, so its best left to the experts, in this demonstration: Please watch this YouTube video.

My first practitioner used muscle testing to determine possible migraine triggers. I have been tested for toxins, deficiencies and allergies and have then taken supplements or followed different diets from the findings. I had the most success with a dairy free diet. However, my therapist felt that there was a physical problem and referred me on to a cranial osteopath, who also practiced kinesiology.

Seeing this therapist was a pivotal point in moving forward in managing get my migraines. She asked my body questions (yes, really!!), to find out how to treat my symptoms, at that moment, on that day. My body is very sensitive and could be incredibly tricky and secretive! The cranial sacral therapy was amazing; I loved  having my skull gently realigned. Although, we soon discovered that too much pressure could be detrimental, but with the mixture of treatments worked so well. There was even a visible difference in my skin tone after treatment. She even felt that the cause of my pain and new symptoms, in 2014; were linked to the dura. This  is part of the meninges, which, amongst other things, carries blood to the brain,  it turns out that she was almost right. Please refer to earlier nformation about  IIH.

Aromatherapy:

I use essential oils to help with pain relief and to aid relaxation. There are many oils to aid symptoms of migraine and headaches. You can read more about this here. I tend to use clary sage, lavender and jasmine for pain; ginger or peppermint for nausea and frankincense and ylang ylang for relaxation and meditation aids. However, this is a matter of personal taste and suitability for use on you. I tend to use a diffuser or pop a few drops on a piece of material. I used to use them in a bath, when I had better mobility and I would recommend this or massage, as the best way to benefit from essential oils. It is helpful to switch oils every few days, so that the body doesn’t build up resistance. Please seek advice when  using these oils.

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There are other treatments I use for migraine. I love to use ice and there are a few hats/masks on the market, with ice packs sewn into them. I would highly recommend the migracap, which I used constantly before surgery for IIH. I am able to use these in between brain and skull surgeries for my IIH; when I have migraines. They work very well with feet in warm, peppermint oil water. I also use sea bands to prevent nausea on journeys and I cannot go anywhere without my ‘gig’ ear plugs and sunglasses. All of these help me to manage my pain levels and work well alongside my prescribed medication. I would highly recommend complementary therapies to anybody. As first and foremost, you need to be proactive in your own care. Always do your own research and check that the treatment is safe for you! 

Chronic Illness Bloggers

#Migraine and #Headache management is as much an art as it is science. #MHAM Day 1

#Migraine and #Headache management is as much an art as a science. http://poht.info/2qNtzdg #MHAM #MHAMSMC

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MHAM DAY 1:

Hi, welcome to day 1 of migraine and headache awareness month. As usual I will be blogging alongside my American migraine warrior peers. It is not MHAM here in the UK. We have just 1 week to raise awareness in September. However as I run @migrainemission; Mission Migraine awareness group’s Twitter feed, I like to join in to raise awareness as we have many US followers.

Migraine and Headache management is as much an art as a science.

Today has given me much food for thought and in the end, I have gone back to basics to get my head around this statement:

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If the approach to care for headache disorders was more scientific then there would surely be fewer cases of misdiagnosis and more appropriate treatment. According to WHO (World Health Organisation); Worldwide, 4 hours of training for headache disorders is given to undergraduates and only 10 hours to specialists. In my opinion, this doesn’t seem appropriate, when migraine, the most common headache disorder, is the third most common condition in the world. This must lead to misdiagnosis/no diagnosis. It is thought that 50% of headache sufferers are undiagnosed.

The Migraine Trust’s facts and figures

In my case, I was diagnosed with migraine at 32 years of age. This was after a year of being misdiagnosised with tooth infection, sinusitis and trigeminal neuralgia. I was finally diagnosed by a neurologist, after being transferred via ENT after seeing a Maxillofacial consultant! Yes I was confused by this point too! I struggled to take on board, that all the pain I had been suffering (which at that time was mainly right sided, around and behind my eye) was caused by a migraine. At this point, I had no understanding of migraine, that I didn’t understand why I had been diagnosed with this condition without scans. I was given a prescription and sent away; with no leaflets, no real treatment plan and certainly no understanding of migraine.

It took 5 years, before an MRI scan was ordered; when my migraines became chronic; I was suffering day in, day out; with no break from the pain. I was taking preventatives and rescue meds; to no avail. My MRI was clear and I was left with this diagnosis and refused further help, when I noticed new symptoms. These symptoms  have led to a further diagnosis of a second rare neurological disorder diagnosis-IIH.

There was science behind some of the treatments I was given, as you’d imagine. I was one of the first patients in the UK to start taking pregabilin (Lyrica). This is an anti-seizure medicine that also blocks nerve pain; Pregabilin uses and side effects as a migraine preventative,

I also tried triptans-the only medicine family developed specifically for migraine; in decades. These started with sumatriptan in the 1990s. Scientific research for migraine and headache disorders is low, with hardly any new medications being made. Compare this to the amount of sufferers; estimated at about 1 in 7 people. ??

Eventually, I saw a Headache specialist in 2014. I didn’t have high hopes as, by then, I knew that my GP probably knew nearly as much as her! However, she did know which questions to ask me and how to get a detailed medical history; this is where the art comes. She knew to ask about my health as a child. Nobody before her had made any link. She asked if I’d had a lot off time off of school, yes. She asked if I’d had lots of tummy aches, No. Not every question was right, but each question led her to join up all the dots. She realised that I’d had headaches from puberty. You can read more about this in ‘The My Story So Far’; in the ‘Inspiration tab!

However, her advice was not to have chocolate, cheese, caffeine, alcohol or late nights…the standard advice. She gave me information that you can find out within 5 minutes on the Internet and much of it was wrong. For me, chocolate has no impact on my migraines and I hadn’t had caffeine, alcohol or dairy for years. Would you tell a sleep deprived friend with constant, unbearable pain, who is so frustrated with the system; to have regular bedtimes. I had stopped listening at ‘no chocolate’? I knew her science was not right! She didn’t listen to my thoughts and feelings and made me feel like I was being difficult, at times. And, she certainly had no consideration of my needs when she refused to treat me, if I continued to be seen by the team treating my new neurological disorder. She disagreed with them, as her facts about the latest medical knowledge was limited. Those 10 hours of training did show up then!

READ THE MEME BELOW CAREFULLY! ‘CAN BE MIGRAINE TRIGGERS:

Headache disorders+patient=unique triggers.

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In my opinion: The art in the science, is knowing what questions will help lead you to a diagnosis. The science in the art is having the correct background knowledge to ask the right questions, give the patient the correct advice and the art of it all is to know the patient’s/your own needs; acknowledge and then act on them!

In the words of this study: “You have to ask the right questions in a manner that will elicit information which will lead you to the right diagnosis. Headache patients are in pain, are often depressed and sometimes frustrated because so many earlier treatments have failed. When you evaluate such a patient, you therefore need to first establish a rapport and then ask the right questions based on the right suspicions. You need to improvise as you go along, based on the information obtained and this has to be done in the right sequence.”Read the full review here

I am lucky in a sense, I have found a specialist team to treat the rare disorder and my own knowledge and that of my GP is as good as any headache specialist that is available locally to me! At the end of the day, it’s the trust I have in my doctors and their knowledge of the science behind my treatment plan, their art of being able to talk to me without patronising me or making me feel like I’m making a fuss! And it’s the art of knowing my own symptoms, triggers and medication needs to manage the pain that brings it all together!

Laura

 

Chronic Illness Bloggers

Chronic Illness Bloggers #ChronicBlogs

I’m just hopping on quickly today as I have an announcement to make.

I am feeling very proud because I have just been accepted to join the Chronic Illness Bloggers Network. You will now see this logo on every post; to show how proud I am.

Chronic Illness Bloggers

This is also means that you will be hearing more from me, as I realised last week that I really want to connect with more people. Those with chronic illnesses, Carers, family and friends of those with chronic illness and promote how a positive mindset can help get through both the good and bad times.

I also feel the need to write more for my own mental health. I will be writing shorter posts, more often (well, that’s the plan) and I will hopefully be featured on the public Facebook page for the network. I will also get the chance to learn from other bloggers and continue to develop my writing. So I would love you to like this page and find out more about how those of us with chronic illnesses get through life with many challenges. You can like the page by clicking this link Chronic Illness Bloggers.

Thank you all for your continued support and I hope you can enjoy more of my writing. If you haven’t already, then please like my Twitter page Happyiihgirl and my Facebook page Tears of strength to help me continue to grow my audience.

Laura

 

Being kind to myself; meditation and selfcare

Those of you who have been following my blog for a while, will know that I love to meditate. It’s one of the only things I can do to help relieve my constant pain; just a little bit. Meditation is taking time out to focus on yourself and introduce mindfulness into your daily routine. You can do visualisations or keep it simple with a guided meditation from YouTube. OI recommend The Honest Guys and Jason Stevenson. They just hit the tone perfectly and even have guided meditations that are specifically designed for those who are in physical pain. They are aimed at anyone who needs guided meditations and visualisations and are great for those with mental health problems; such as anxiety, depression. This two are especially good, as they are generic and great for beginners and anyone else! 

Whilst I’ve been suffering from so many infections and heightened pain levels; I’ve forgotten how helpful I find meditation. Now this is one of the main issues that I have picked up on that are not helping me reach my goal for 2017. I made a promise to be kinder to myself. I am much better than I was and doing this alongside Karen Thomas; my close friend and founder of Conscious Crafties is so helpful. We can remind each other. Losing your way when you have set goals for yourself is normal; our brain fights to go back to what it knows, when we are trying to change our mindset.

So, I’ve revisited some of the steps towards my goal (and decided to keep this image in my stored photo favourites! 

  • I have worked hard to limit my to do list. I bought a diary so that I could plan out my social media engagement and tasks and creative themes for my business. I’ve used an erasable pen or pencil, so that I can move tasks if I’m having a bad day. 
  • Karen has helped me with the ‘positives’ daily ‘ post. This is now put up by other Crafties in our community group (private for paid up Crafties, but an amazing safe place filled with kindness for others) but I do try and join in every day. I am so pleased that my idea has been embraced by many of the group’s members. 
  • I’ve been able to say no to friends visiting when I need rest days and tried really hard to celebrate my achievements.

However, I haven’t been so good at self care. I have got out of the habit of revisiting my pinterest vision board for achievements and positive quotes. Creating time for myself has been neglected a little; mainly by my meditation practice  disappearing from my daily routine. I’ve also neglected my writing. Both of these are so important for my mental health. I think I will try planning it into my day’s tasks in my diary. We’ve also made changes to my Carer’s tasks for the day and that has been an amazing help for them and myself. 

Last week, my writing mojo returned and I have been honoured to join the team at The Fine Print of Pain. This is a brand new site, intended for people with chronic illness to have access to a plethora of advice, information and even has a space for chronic illness creators to show off their talents. This excites me so much. I wrote my first article to explaining IIH you can find this here. The editor, was stunned by my writing and said I had “produced an article that was articulate, focused, and properly done, especially for your first time! I feel so proud of this (and will add her words to my vision board). However writing like this today, about what is playing on my mind is so cathartic. 

So, I have started this blog instead of meditating which  was my plan. However, I just felt so sick that I couldn’t settle. Being able to just write about what is happening for me now, has distracted me and my nausea is settling now (with a little anti-emetic help and a dose of oramorph). It’s reminded me how much writing helps me work on my positive mindset. I’m now going to pause, meditate and hopefully have a snooze and then I will finish what I have to say about meditation and self care; the first steps back to my daily routine for a positive mindset. It’s 10:52am. I’m going to listen to a sleep meditation to cleanse your chakras; appropriate for those with an affinity toholistic practice and spiritually.                  Before Sleep: Chakra Realignment

Ahhh….it’s now 12:20 and I’m having my Pukka ‘revitalise’ tea, tucked up in bed and feeling so much calmer. That is all it takes to remind me of the importance of this. My pain is lower, I feel a tiny bit more energised (still having a bed day though) and my shoulders are still lower than my ears! Ok, I still look poorly but I am, so I just have to deal with that! 

Self-Care

The actions that individuals take for themselves, on behalf of and with others in order to develop, protect, maintain and improve their health, wellbeing or wellness. SourceThe self-care forum.

I have been working towards all of these things with the support of an amazing group of women. It is run by an  inspirational Coach calls Josie Brocksom who runs Worry Free hypnotherapy and coaching. It makes me focus on recognising my needs so that I can be the best that I can possibly be. I highly recommend this lady and her fab blog too! 

Next Steps

It’s now time for me to put into action some of those good habits that I have let slip.

  • I will plan time to meditate at least once a day
  • I will make use of #wednesdaywisdom by posting in here, on Twitter and my Facebook pages (personal and my Paprika Jewellery & Accessories page, which you’re very ŵelcome to visit) to help me revisit my vision board.
  • Write regular blog posts, I’m going to aim for one a week, maybe a fortnight. 
  • Try to continue to post positive comments daily in the Crafties community
  • Take praise on board and capture some of it to add to my vision board. 
  • Plan my social media time, so that I don’t let it take up too much of my time; which could be used creatively or as rest time