Tag Archives: recovery

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. ⬇️

Paprika Jewellery & Accessories

Paprika on Facebook

Paprika on Instagram

Paprika on Pinterestl

Paprika on Twitter

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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? 

Chronic Illness Bloggers

A poem for all chronic illness warriors ‘It’s okay to rest!’ #chronicillness #chronicblogs

Are you a chronic illness warrior?

Do you fight the pain everyday? Do you even get cross with your body for not doing what you want to! I do, but I’m working hard to remember that it’s okay to rest!

I hope this helps you if you feel guilty for doing nothing. Just listen to your body!

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It’s okay to rest!

My body fights the constant pain
And drains all my energy spares.
My body ransoms my attempts to move
Yet soothes the grief for what was.
My body tricks my brain into a spin
Though wins with time to calm my mind.
My body taunts with glimmers of light
When nights are long and sleep is gone.
My body is learning it’s okay to rest
But tests the deal that I’ve made to heal.
My body and mind still fight the pain,
But gains most when I concede to rest.
Now I believe that it’s okay to rest!

Copyright Laura McKee 2018

Chronic Illness Bloggers 

THE #operation: How it’s only the beginning and that more operations are highly likely. Alternately titled #IIH and the #styloidectomy.

(Warning for the squeamish: this blog does include image of wound/scar)
It’s pretty scary stuff knowing they’re operating there. Yes there, in your skull; removing a piece of the actual skull. Scientifically a piece of bone called the styloid process, hence the name styloidectomy. The styloid process is a bone on the outside edges of the skull that is small and can actually move without it causing any problems, however, often this movement can be the part of the problems for a small number of people. Many of these people have ended up under the care of my consultants, who look at things a bit differently than the rest of the world! They look at the benefits that the patients identify verbally, as well as the numbers after the initial tests for IIH. (See previous posts) here

In my case, my LP opening pressure was relatively low but I instantly felt better and that continued for 5 days. When I had venoplasty the same thing happened. They can see from my scans that my intracranial veins are tortuous and I have many areas of compression. My styloid process had my jugular vein and some nerves  wrapped around it. Perfect for a really nice game of operation! 

  
 

(They really did have buzzers to warn them if they touched my nerves-⬆️⬇️⬅️➡️🔔🔕)! 😭😭 

  
 

The purpose of the styloidectomy is so that they can fit a large stent into my jugular vein in that area and now into the gap left by the removal of the bone. The diagram shows where that bone is so that you can picture it. Mr A has removed most of that bone, as you can see, it’s quite easy to get to; sticking down like that! He only took about 45 minutes to remove it. However, I can assure you that the hole he needed to make to get to that bone was much LARGER and I have a massive scar to prove it. 

  

Immediately after surgery I was in less pain (I guess I still had GA coursing through my veins), but I was put on reduced pain meds by a junior doctor who had different ideas to the anaesthetist and Mr A who were both happy for me to stay on my high doses of prescribed pain relief. Anyway, he also hadn’t signed off for me to have my morphine either that night! Grrr!! Amazingly, I managed on oramorph and slept most of the night and was woken at 6am by the nurse who had collared the dr and made him sign it off for me to have the morphine tablet with my other meds. After seeing Mr A at 7:20am!!!!!, the nurses removed the drain and cannula and discharged me without any dramas.

Next came the most surreal part of the experience; the journey home. Driving home and sleeping in the car was more bearable than I thought it would be, but we had to stop to use the facilities and get lunch. Joel wheeled me round to the disabled toilet- first we went down in the lift to the main loos as we were just trying to be quick, but they were on the main floor-so like a comedy act we went straight back up in the lift, in a daze. When we finally got to them, you needed a radar key to use them! This is the first time in my life, I’ve ever actually needed one! Once I actually got in the loo, I pulled down the rail and the panic alarm cord was wrapped around it; unreal! Quickly, Joel wheeled me out whilst we both giggled and I tried to cover my ears (that didn’t have my usual ear plugs in), so were fiercely objecting to the piercing buzzing! Finally I managed to actually go to the toilet, so Joel got me back to the car before I had a meltdown in the middle of Clacket Lane services! Needless to say, we ate lunch in the car. 

I’m so lucky to have my best friend to help me through every step of the way; not only major surgery but, to keep me laughing through it all; even toilet fiascos in a service station! 

  
Once home, I realised that the journey from the car to the stairs was a lot further than I’d managed so far; it felt like a trek to the South Pole! I was shaking all over when I got to my stool at the bottom of the stairs, but all I could think about was the fact that I still had to climb The Stair Mountain! Those stairs looked like impending doom, but all I wanted was my safe place; back in my bed! So here we were again;  this was going to be killer. I just knew. I prepared myself as best as I could. Oramorph and Joel to help me on my way (no migracaps allowed obviously) and I began the expedition. Oh. My. It was probably one of the worst climbs I’ve ever done. Every movement of my body hurt (my wound and my head) and having my head forward/down in crawl position was the worst position possible, but my legs were far too weak to even try to climb upright. I did however crawl as quickly as I could force myself to go, in between yelps. 

Finally I to came the realistion that I wasn’t going to be able to sleep on my side of the bed during my recovery. I usually sleep on the right, therefore my bedside table is on the right. But I can’t turn to the right to reach for things! So, once I’d recovered from the stair climb enough to pop to the loo, Joel moved all the pillows and then switched the bedside tables/cabinets. Now the left is where I will stay for my recovery. At the moment, all I can do is eat, sleep and watch TV. 
  

As you can imagine, I was absolutely exhausted by this point and slept all night and Saturday morning but by the afternoon I had started to be in more pain again. By. Sunday morning I was beginning to panic about detoxing at the same time as trying to heal from surgery-it just didn’t seem right. I asked on my FaceBook page and a couple of friends agreed with me and so did Joel. The consultants and my GP had all said that I’d stay on my medication cocktail and reduce it as I’m able to. I did feel torn because I wanted to stay off of the naproxen and I’m desperate to come off of morphine but I knew I had to stay on what I was on pre-op because the lower level of drugs just weren’t touching the pain and the pain from the op is generally lower than the pain I experience most days! Well, I guess it’s not that odd, this surgery wasn’t meant to fix ALL my pain and symptoms. It was primarily to make space for the stent. However, it can have an impact on symptoms which is why I’ve been asked to keep a symptom diary for a fortnight. 

Writing this has been tiring (although I have taken my time and done it in bits) but very cathartic and I think I needed to do this to get it all out of my system. I hope that it shows you why this isn’t going to fix everything, an insight into what it’s been like; as usual, the laughter and the tears and an understanding of what I’m going through at the moment. Thank you for reading and as always, Im sharing for understanding and awareness-not sympathy!