Polly asked me to write about a few of the gadgets and techniques that have made living with a CSF leak bearable. Having written all these survival tips I see that I am a teensy bit goal and gadget driven, but these things have kept me sane and let’s face it I have not been spending much on going out partying! I have given links on Amazon, but obviously you can purchase them from other suppliers. I hope you may find some of them helpful in getting you through.
Prism glasses are my number one suggestion – they enable you to lay completely flat and read, watch TV or use a laptop perched on a lap tray. If you use varifocals I find they are fine with the prism glasses for TV watching. However, I could see better if I used a middle distance, off the shelf pair of glasses instead for work on the laptop. Click here for link.
I am able to swim, but appreciate that this is not advisable for all leakers – it is very dependant on the cause and location of the leak, and it's really important you liaise with your doctor or consultant about whether it is safe for you.
If, like me, you find swimming very dull, purchase a Finis Duo underwater MP3 player – you download songs from I-tunes after first converting them from MP4 to MP3 format. If you buy one from Amazon it may come with a faulty charger cradle, but it is the cheapest place to buy it. You just contact Finis and they send you a new charger cradle for free (they redesigned them, but Amazon have obviously got an old batch). You use wax earplugs and a swimming hat with it, to seal off your ears. The sound is played by vibrations through your cheek bones - amazing. I don’t like earplugs in my ears, so it suits me. There are other underwater MP3 players that work via earplugs. One thing I would say if you get the Finis Duo is to dry it properly after each use and occasionally soak it in descaler, as scale builds up on the charging pins and stops it connecting with your PC. (it says on the website use alcohol, but that doesn’t work). People in the pool actually say to me ‘don’t you find it relaxing just swimming up and down and thinking your own thoughts? Do you really need music?’ (quite outspoken I know) Answer - obviously my own thoughts are not as interesting as yours. The link is here.
I also use a snorkel, noseclip and swimming goggles. You would have to check with your pool if this is allowed. www. audible.co.uk do up to date and back catalogue audio books, often with famous people reading them. You take out a subscription for one or two a month to suit you and it is the same price as buying a paperback. I found that although very active in my up time, because you have to lie down more than is normal, I am not that tired at night. Not being able to sleep drives you a bit crazy, so I listen to these audiobooks. I use a Roberts Pillow Speaker that goes under the pillow, so that I don’t wake my husband. The link is here.
If I am stressed I have found breathing exercises have helped me to keep calm, because lets face it, having a leak is deeply frustrating. Breathing exercises stimulate the Parasympathetic nervous system, which is the opposite one to the Sympathetic nervous system that causes your fight or flight reactions. When the Parasympathetic nervous system is stimulated, the body gets the message – ah I am safe in my cave, I can relax. I like the Fitbit Charge 2 because it has the relaxation breathing programme on it. It also records your steps and swims, so helps with fitness. Some of the other Fitbit models may have the relaxation programme on them and they are cheaper, but I got this particular one because it records the swimming. I am lucky, as I have been able to organise my work into my six hours of up time and that keeps me sane. I used to only be able to be up for 15 minutes at a time, so I have come a very long way. I was a highly motivated, type A person before all this started, but I have found that just tackling each day as it comes and not allowing my mind to wander into the ‘what if’… is the secret to staving off the blues, whilst you wait to get fixed. Let people help you as well – I was extremely independent before all this happened. If you have a cracking headache and feel sick, get someone to pick up your children for you. I have just had an epidural blood patch and am hoping this could be the end of the leak at last, but some good has definitely come of having to slow down – not a single bee is going to fly past me now without being fully appreciated and admired. Also I realise how brilliant my long suffering friends and family are – they will not allow me to be down.