When I was initially diagnosed with Guillain-Barre Syndrome I was in excruciating pain and being given doses of Morphine throughout the day and night in an attempt to make the pain bearable. I also couldn’t walk on my own and had lost normal use of my arms and facial muscles. Although I was extremely happy when I was able to leave the hospital, the thought of dealing with everyday life was overwhelming. Simple things such as showering, cooking and keeping the house clean were impossible tasks.
Initially I had no idea what to expect or what sorts of things I would need. I was just sent home and left to figure things out for myself. Over the 3 years following my discharge from hospital I’ve tried many different products and suggestions from other people, some more successful than others. I wanted to share my top 10 products and tips in hope that it might help someone who is either new to Guillain-Barre Syndrome or perhaps has been suffering long term and is looking for some advice. I’m very lucky in that I now don’t need any walking aids or disability adaptations in my home so my suggestions reflect this. Please do feel free to comment with any suggestions of your own as I’m always open to trying new things!
Please note these are purely my suggestions, I’m not receiving any benefit, financial or otherwise from the sale of any of these products.
My favourite products:
1.My V-Shaped back pillow.
This was a gift from my sister that was given to me very early on when I was struggling with intense back pain and having difficulty sitting comfortably or sleeping in bed. I took it with me to hospital and I still use it every day when I’m sitting on the sofa or sitting up in bed. It’s been a life-saver for me. The memory foam really supports my back and neck and it seems to help make me more comfortable. The one I use was purchased at Dunelm but you can buy them at lots of stores that sell bedding or homewares.
2. A plastic shower chair.
This was an absolute essential product when I was discharged from hospital. I got mine from eBay for around £25, to use in my shower cubicle at home. My legs were so weak that I really struggled to keep upright for months after my diagnosis, especially during a shower because I like them really hot, it was a huge strain on my body. There were many times I’d be close to passing out because I’d tried to stand and shower. Even with two people to help me (one to hold on to me and the other to wash me) it was still too much for my weak body. The chair really helped alot because it meant I was able to stay in the shower for sufficient time to wash and it also meant I could wash some parts of my body myself which was great. Having to have other people accompany you into the shower isn’t exactly comfortable in any sense of the word!
3. My plug in electric heated throw/blanket.
This was recommended to me perhaps a year or so after diagnosis by a fellow GBS survivor. I mostly use it when sitting on the sofa especially in winter time. The entire blanket heats up and it does an amazing job at keeping my legs warm which helps to ease the aches and pains. I also find it less painful to move around on my legs when they’re kept warm. It can also double up as a blanket to throw around my shoulders to ease back pain or I’ve even used it under my duvet in bed. It’s amazing! Even my cat loves it! The one I use is Dreamland branded and I bought it from Argos. It uses very little energy and there’s been no noticeable difference in my electricity bill which is important to me because I’m on a budget.
4. My Simba mattress.
I only recently changed my mattress around 6 months ago but wow, I wish I’d changed it much sooner. Since having GBS I’ve found I toss and turn in my sleep alot and when I wake up my body feels like it’s ran a marathon during the night! The biggest difference I’ve noticed with my new mattress is that I no longer have sore heels in the morning. Previously I’d wake up sore every morning due to the pressure of my heels on the mattress during the night. Sometimes the same would happen with my elbows, knees and shoulders. I notice a MASSIVE difference when I stay in a hotel, the morning pains immediately return. So I’d definitely recommend investing in a good mattress. I couldn’t afford a brand new one as they cost around £750 for a king size although they do come with a 100 night trial. Instead I purchased from their eBay outlet, I assume this is where they sell all the mattresses that are unwanted after their 100 night trial. They are professionally refurbished and a brand new cover put on and I was super impressed, mine looked good as new and was less than half the retail price.
5. Stick on heat patches.
These are a god send for me when I’m out and about, particularly at work or whilst travelling when I can’t have my hot water bottle handy (which by the way, I use ALOT!). I’ll use them in conjunction with pain medication to help ease my back pain or they’re also really good for keeping my body temperature up because the cold really doesn’t help my mobility. You can pick these up at most chemists or some pound shops. My prefered ones to use are Cura-Heat branded.
6. Floradix Iron and Vitamin Tablets.
I’ve tried various different vitamin tablets over the years but these ones in particular seem to help a little with fatigue. They contain Iron in any easy to absorb form along with vitamins B and C, folic acid and herbal extracts. They can be fairly expensive compared to basic multi-vitamins so I shop around for the best deal. Usually, I find Amazon to be a very good price.
7. Epsom salt baths.
Epsom salt baths have lots of potential benefits including reducing inflammation, helping with pain relief and even aids a restful nights sleep. For me I’ve found that relaxing in an Epsom salt bath before bed helps my legs to feel less achy and also helps me to relax before I sleep. I suffer alot with restless achy legs, particularly in bed so they really do help with that. Epsom salts are widely available and relatively inexpensive. I use half a cup to one cup in a full bath, although the instructions do seem to indicate that more is needed but for budgeting reasons I use a little less so the pack lasts me longer.
8. Bachs Rescue Remedy
If you’ve never heard of Bachs Flower Remedies before then let me explain a little about what they are. They are a natural way of ridding our bodies of any emotional pains and suffering which over time can prevent the healing of our bodies. It might sound alot like airy fairy nonsense but I was given a free trial with a professional counsellor who was studying for her Bachs certification and I’ve been using them ever since. Rescue Remedy is a premixed solution of 5 different flower remedies that are useful in times of crisis or stress such as a driving test or to calm nerves before a flight. I find that when I can feel my nerve pain heightening I immediately start to worry, especially when I’m away from home. This has a knock on effect on my pain, the more I worry the more pain I feel. Just a few drops of the Bachs Remedy calms my emotions, stops me from panicking and this seems to ease the pain somewhat. I carry it around in my handbag and it’s a holiday must have for painful flights and car journeys! Best of all it’s a natural product so no worries about taking too much or having any bad side effects.
So those are my personal recommendations for products that have helped me to deal with everyday life after Guillain-Barre Syndrome. Feel free to comment with your own helpful tips for other GBS sufferers to try. Wishing you all the best of heath for the future.