Tag Archives: iihwarrior

How to stay sane when stuck in bed with chronic illness or recovering from surgery. An insider’s guide

Staying level headed with debilitating pain. 

Those of you that already follow my story know I’m no stranger to surgery. I’ve  had my 3rd brain stent surgery for IIH (Idiopathic Intracranial Hypertension ) on 15th November. I was aiming to get downstairs on Saturday and I made it. It’s so important to have goals to keep you motivated. I had a family day yesterday too!

But I’m going to be spending this week in bed again recovering, as expected. My pain levels are high today and I had a bad night’s sleep, but I don’t regret it. Days with family are what keep you going . My condition is extremely debilitating but I’m not seeking sympathy; I share my experiences to raise awareness!

Please note: if you have questions about IIH, any chronic illness or mental health concerns; please speak to a trained health professional. These tips are about self care and any advice I share is based on my own experiences.

I shared this selfie on social media, 10 days after surgery. It was youngest’s 13th birthday and I was in bed, fed up that I couldn’t celebrate. The response to this post has been amazing. I received lots of supportive messages and my husband, Joel, was asked at work how I stay sane and positive when I’m stuck in bed for weeks – struggling to get to my en-suite bathroom at times.

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So here’s my guide to staying sane as a chronic and invisible illness warrior! 

  • Don’t fight the pain! I used to be determined not to give in to the pain and I’d push myself to do too much too soon, making my recovery take longer. Now, I try to listen to my body and have retrained my brain to know that it’s okay to rest, This has taken years of making mistakes, until being taught to recognise and change patterns in my behaviour by my coach, Josie (details below).
  • Ask friends and family to tell you when you’re looking tired. It’s easy to miss signs that you’re flagging, but don’t shy away from asking those close to you to say if you look like you need to rest. If someone tells me I look rough I’m not offended, I just realise that I do hurt a lot and may need that pain relief!

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  • Remember your condition doesn’t only affect you. A delicate ecosystem occurs for most familes when someone has a chronic illlness. This means any change has an effect on family life. If you’re the one in constant pain, then your contribution to family life is probably limited. For example, I usually do online grocery shopping and am usually the mediator. Plan for those times when you can’t make your usual contribution. Try asking a friend to pop to the shops or do some jobs around the house, so your partner doesn’t have to do everything!
  • Give yourself time to recover. I always seem to forget how tough living with daily high level pain is or how hard recovery from surgery is. So I tend to think I’ll cope better than I actually can. Now I set myself goals and break these down into smaller steps. E.g restarting your physio or getting dressed before venturing downstairs. Whatever goals/steps you take need to be all about you! This is the time to practice self care! Maybe keep a pain diary or notes after surgery, so you can look back at what has worked for you in the past,

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  • Be honest about having visitors. Let’s be honest, the novelty of surgery soon wears off and friends might get bored with your chronic illness. You’ll probably stop getting as many flowers and cards, but hopefully your friends will still support you as much as ever. For me, receiving a text cheers me up, but having visitors (when you can) is vital! You’ll get a mental boost and it breaks up the bedroom boredom. But, if you’re in too much pain; be brave and postpone. True friends will understand and if they don’t, then you don’t need them!
  • Keep a gratitude journal. I spend time every day reflecting on what I’m thankful for. I write 3 positive things in my diary every night or the following morning, This can be anything and it’s the little things that count when you’re recovering from surgery or a bad flare. Washing my hair, managing to eat a proper meal, having a snuggle with Joel or a giggle with my boys mean so much to me in that acute pain phase. I’d suggest starting getting into this routine before surgery. It’s also really nice to share these with friends or family!
  • Meditate. I can’t explain how much meditation helps keeps me calm in hospital and in the following weeks. I download my favourite meditations (in case there’s no WiFi) on my phone and take my headphones to block out the horrible noises on a ward. They also help me sleep between hourly obs through the night! I also use techniques I’ve learnt to visualise my happy place to lie still during a procedure or anaesthetic. You can read my tips for meditation here.
  • Use affirmations to visualise positivity. Ok, so I know the word meditation may have scared you off, but stay with me! Using affirmations has been the key to staying sane through 3 brain and spine surgeries this year! I also use affirmations cards from TheYesMum  (@theyesmummum on Instagram) daily.

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My coach Josie, from Worry Freedom created personalised affirmations to help manage my worries, which are mainly about how surgery impacts my family. She turned each concern into a positive affirmation, such as ‘I am proud that my boys have built resilience’. I record these as voice memos on my phone and listen to them before, during and after my stay in hospital. They’ve helped me to stop worrying about everyone else and concentrate on my one job – healing.

  • Ask family to spend time with you in your bedroom. When you’re always in bed, it can get very lonely. So, whether it’s snuggling with Joel watching TV, having a chat about the day or watching a film with everyone on the bed; having my family come to me is so important. For example, we ate youngest’s birthday meal in my bedroom, so that I could still be a part of his special day.
  • Entertainment. I’ve always been against TVs in bedrooms (personal choice), but after my first surgery Joel set one up in my bedroom so I could watch my favourite comfort movies. It’s stayed! I rely on my iPad so when we realised this was going to be our new normal, Joel set up Apple TV so I have lots of choice. I’ve also have audible and Spotify so I can listen to gentle music or spoken word on the days when I can’t open my eyes.
  • Bonus Tip – When you’re doing better, but still stuck in bed or the house I think you need a hobby. Many chronic illness warriors craft and this helped me not to feel so lost when I’d been diagnosed. I’d taken silversmithing classes before falling ill, so I began making beaded and up-cycled creations. Now I run my own online business with an Etsy shop. I’m closed whilst I recover, but I’ll be posting more about this as I prepare for reopening. You can see what I make on my social media pages too. ⬇️

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So these are my top 10 tips for managing to stay positive, or at least rational when can’t do anything. But hey, we’re all different and these are just what works for me, If you’ve got the money to invest in working with a coach, do it! It’s all about finding solutions and a good coach can change your outlook! I had counselling after diagnosis, when I was still grieving for the life I’d had. If you’re struggling please talk to your GP/Doctor straight away!

Are you recovering from major surgery? Do you have a chronic illnesses? I’d love to hear about what you’ve tried if you’re housebound or bed-bound. What tips do you have to keep rational and level-headed? 

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#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!

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Skull surgery again #braindisease #iih #iihwarrior

On Friday we took another trip to Cambridge to see the Ear and skull surgeon; or The Wizard as I call him.  He could really see an improvement in me as if not seen him for about a year. It was so nice to hear that, as you don’t always notice what a big change there is over that space of time and he hadn’t seen me since my stent operation in September last year (2016); which we feel had an effect on my noise sensitivity; although I still hear the pulsatile tinnitus and have to wear ear plugs when I’m out of the house. He could also see the vast improvement in my cognitive function that improved after the styloidectomy I had in January 2016 and again after the stent surgery. I’ve only just started noticing these benefits again, due to suffering from that horrid infection for most of February and March and struggling to get over pushing myself to much at Christmas. Everything is feeling very positive. 

It was a very quick appointment as he was just confirming that the next operation is on and what the side effects might be.   He will be removing some of the bone of the C1 vertebrae on the opposite side of the jugular vein to where I had the last bit of bone (the right styloid process) removed. This should open up the area for the blood to flow more easily through my constricted jugular vein; however, I may need a stent put in afterwards to get the full benefits. The side effects are the same as with the styloidectomy; possible weakness of the shoulder, a hoarse voice and other minor side effects. 

Below is a diagram showing the skull. I have highlighted the area where they need to make more room for the jugular vein (allow the diagram shows these areas on the left side of the skull  The Styloid process is on the left of the circle; sectioned off. This has been removed on the right side of my skull. They will be working within the right half of the highlighted circle for this operation. 


We are just waiting for The Wizard’s notes to get to the secretary and then we can book a date and this should be soon as we are very lucky to have private health insurance that covers all my treatment for the IIH. (Idiopathic Intracranial Hypertension) 

To say THANK YOU for all of your amazing support for my next skull surgery and for your constant patience and understanding; I am offering a chance to win this beautiful heart jewellery set of necklace, earrings and bracelet. They are all made with blue and green glass pearls.


💚💙💚 FACEBOOK GIVEAWAY 💚💙💚

Click here to enter
💚LIKE & COMMENT ‘yes please’ on my Facebook page to win💙

The giveaway will run until I reach 500 followers or I have recovered from surgery-whichever happens first. There is NO set deadline; however I will give you at least 24 hours notice before I close the post.

So to take part: 

***👍🏻 LIKE the Facebook post

***COMMENT on the Facebook post with the words ‘yes please’ or similar

***SHARE the Facebook post. This is not a requirement for entry but there is more chance that this page will reach 500 likes sooner. It would be a really kind gesture, so a HUGE thank you if you share too! 

****If you’re feeling super kind then you could SHARE my Facebook page too.

I will let you know my surgery date and will post updates when I can. For more information on IIH (Idiopathic Intracranial Hypertension) go to: 
To find out more about IIH click here

If you would like to make a donation then please visit: 

www.justgiving.com/iihuk
Thank you again, Laura 💚💙

* This Giveaway is in no way affiliated with Facebook or WordPress