Tag Archives: rare braine disease

#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

 

Chronic Illness Bloggers

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Mental Health Awareness Week-Thriving against the odds #mhaw17

Did you know that those with the most common chronic health conditions, are 2-3 times more likely to have mental health problems? The prevalence of mental ill health is most prominent in those on low income, young adults 18-34, females or those living alone. Mental Health awareness week 2017 is here and I want to write about how I do more than just exist, despite the adversity I face because of my chronic illnesses. I hope that by sharing my experiences; I can help you recognise the steps you could take to improve your mental health, whilst dealing with chronic illness. I want to help all of you take steps: TO THRIVE AND NOT JUST SURVIVE. Learn more about the message from the Mental Health Foundation.

What daily steps could you take to make life more positive? What strategies can you use during flare ups or difficult times? How can you feel confident that you have the toolkit to thrive? I will share some of my experiences and strategies that I use  to thrive, despite constant high level pain, which leaves me in bed about 90% of the time. If you’d like to know more about my illnesses (Migraine and IIH-a rare brain disease that mimics the symptoms of a brain tumour) then please read this.

Before you read any further, I want you to make a choice. Which path do you want to choose-a) ignore your feelings, taking no responsibility for your emotional wellbeing; b) wallow in self pity, moaning about life; or c) take steps to make the best out of a bad situation? If you choose a or b, then I suggest you won’t gain from reading any further. If you chose c, then I will do my best to help. There are many ways to deal with mental health problems; this blog is purely my own opinion. Please seek medical attention if you are self harming or having suicidal thoughts. There are no quick fixes here, but in order to move forward then you will probably need to seek some form of professional help; if you haven’t already. 

SEEKING PROFESSIONAL HELP

I have had counselling prior to becoming ill, after we nearly lost our second baby at birth. Because of this, when the magnitude of my current situation hit me; I was quicker to react and smart enough to know that I needed help. Living with chronic illness means that you usually grieve for the old you. Therefore, it is likely that you will need some form of professional support; such as counselling or CBT. Chronic illness also impacts on everybody whose lives are affected; particularly close family. If is now 4 years since I was diagnosed with IIH, but I continue to actively seek help. Most recently, we felt that our family would benefit from group therapy. This time my husband was the brave one and sought help. At the time, I didn’t realise how hard he found it to reach out, but a few sessions in and we are all feeling the benefits.

Steps to improve your mental health

My first question for you is what do you love to do? What do you spend most of your time doing or thinking about? (Keeping it clean and legal of course). I love to make others happy, particularly my husband and children; but, I’ve always felt the  need to go beyond that. Before I had to give up work I was an Early Years teacher. My passion was making those children smile as they learnt. To see the children run out to their parents at the end of the day, bubbling with chatter about what we had been doing; was my life’s purpose! When I had to stop teaching, I felt utterly lost. So, one day I I realised I needed a new purpose. I decided to use the skills I had learnt during a silversmithing course and my love for writing. I decided that, despite my constant pain, I had to make the decision to make the best of an awful situation. I now write this blog and poetry for myself and others and I run my own jewellery and accessories business Paprika Jewellery & Accessories. So, if you’ve read to here, you’ve probably made that decision too. Take your time to think carefully about what makes you happy. It may take time, but hopefully you’ll find a renewed sense of purpose. You can do what you love, despite being ill. 

This was my first step along the long and winding path, towards thriving with chronic illness. At first, I felt guilty about  crafting, when I was off sick from work. However, it actually distracts me from the pain and I soon learnt that my social workers and GP understood how important it was for my mental wellbeing. So, don’t be put off by feelings of guilt or by feeling overwhelmed. It doesn’t have to be a big thing and you don’t have to make it more than a hobby. You could take up photography or journaling. Ask yourself this: wouldn’t it be nice to do so much more than just coping with your illness? 

HOW TO COPE DURING DIFFICULT TIMES 

I want to be clear that I am not saying that everything will be a bed of roses. There are going to be dark times; that is expected and it’s ok to take time out, to do whatever you need to do, to get through those days. When I’m low, I talk. I talk to my amazing friends, both local and online. Online support groups are a great resource, but they do need to be chosen carefully; some have a negative atmosphere, which could do more harm than good. It may take time to find the right one(s). I have made amazing friends in my carefully selected support groups, others who get it. I also benefit from a group for women who want to live a worry free life, which has helped develop my toolkit immensely. All the groups I’m active in, have a positive and empathetic ethos. It’s taken time to find the right groups and the right people. I have left groups which don’t fit what I’m looking for (that in itself changes),  so it is a case of trial and error. In very dark periods, I reach out to my GP. Acknowledging that you’re finding things tough, can, on its own, help you out from under that dark cloud. 

THE TOOLKIT TO THRIVE  

I set myself a goal at the beginning of the year and break it into manageable steps. I keep a Pinterest board to help me to  revisit it. I also use a diary and in erasable pe, I write 1 or 2 goals a day. If I can’t do them, then they can be rubbed out, so there is no feeling of failure. I also ensure that I think about or write at least 2 positives from my day; usually on the positive post in my Conscious Crafties community; which I set up and is now posted daily by a rota of lovely members. I also try to meditate or use relaxation methods each day  These are the main tools I use, but you will find your own. 

I want to properly introduce you to the biggest influence on my emotional wellbeing-my husband and best friend; Joel.  

Joel is my main carer and I am so proud of him, as he is now the face of Carers for Lloyds Banking Group and a co-chair for the Family Matters strategy across the whole bank. This week he told our story and how my illness impacts on our family’s mental health. In the article, Joel talks how he has retrained his brain to help himself, me and our boys; look after our emotional wellbeing. He writes about the simple act of ncouraging me to recognise my daily achievements; even if it’s just managing a shower. He also talks of how he helps himself and our boys (11 and 13) assert a positive outlook, by asking them on the way to school: “what are you looking forward to and what are you hoping to get done today?” He also wrote about our use of a positive jar, which you can find more about here.

Our story is helping people and inspiring others, clearly seen in the comments about the article. Here are just a few quotes from his co-worker, after reading the posts.

“I like the idea of a positive jar and will try this at home. I have a 14 year old daughter struggling with anxiety issues at the moment….I hope this idea will help her.”

“Your positivity is really inspiring and some very practical advice.”

“What an amazing family you all are. I really like how you acknowledge the realistic things.”

As well as ideas mentioned above, we use the wide-ranging toolkit that I gathered in my teaching career; Joel brings extensive managment and leadership skills and our boys bring their astoundingly mature points of view and striking honesty about what they see. We ensure that there is no blame put on me about our situation, (inevitably I still feel guilty-but hey, I didn’t say we’d cracked it). We also make time for a monthly family meeting and a monthly afternoon tea. 


In conclusion, I know that I am lucky to have a wonderful family to keep me positive, however, there is always support for you somewhere. So, start your positive mindset today by thinking about what makes you happy. If you use visualisation techniques then this would be a great way to spend a good amount of time to think this through. Emotional wellbeing is often overlooked by all of us. For those of us with chronic illnesses it is even more important to try and work on building resilience, flexibility and resourcefulness. Please write in the comments if you find any of this particularly helpful or you would like more information on something specific. I am always happy to help, but please bear in mind that I may take longer to respond if I am having a flare or taking some time out.