I’ve been supporting my husband with this condition for nearly a year now. I wanted to share my experience in the hope it’s of some help or comfort to others who find themselves in this position. My experience and thoughts are just that – mine. Others will no doubt experience and feel different things. My view of things seems to change on an almost daily basis. I think the most important thing is to try and remember that you’re not alone and in all likelihood things will get better – just try and find the silver lining and go with the flow – no pun intended!
Things to expect
This is life but not as you know it. Life will never be the same. Don’t be scared, as chances are they will get better, but it is a life-changing event. Things that you both once took for granted, they might not be able to do just now. Things that once seemed important aren’t. This isn’t necessarily a bad thing, but things won’t be same going forward. In my case, I’ve hopefully developed a well needed perspective on life and now appreciate the simple things in life. I recommend buying yourself a copy of Richard Carlson’s Don’t Sweat the Small Stuff. Yup, this isn’t small stuff but it helps me deal with the small stuff so I can focus on this big stuff. If it ain’t life or death, it ain’t worth worrying about.
You’re in charge. Woohoo… not. It’s always been a running joke in our house as to who was in charge (me by the way – always – in case you were wondering), but now depending on the severity of their symptoms you may have to do most if not all household chores, shopping and just generally organising and remembering things in day to day life. Getting out of bed and just looking after their own personal needs is a struggle for a leaker. Bending or lifting is painful and can make things worse, carrying things and doing housework or many other tasks is out and it is often hard for them to remember day to day things. So by doing everything round the house this gives them the time and energy to focus on getting better. Sometimes this can get a bit much. After a day at work coming home and starting all over again 24/7 does get wearing. Accept help from friends and family when it is offered. Many people around you might feel helpless as there isn’t much they can do for the ‘patient’, but even suggesting to them things like bringing some dinner round, gardening or doing a bit of housework just takes the pressure off you a bit. I’m lucky as we don’t have kids. I should imagine that would be a whole other ball game – good luck!
Develop patience. Due to their symptoms, leakers can’t rush or hurry about. They need extra time to move around or to factor in lying down time between doing stuff. So plan for this and give plenty time for doing seemingly normal things, hospital appointments or just getting going in the morning.
It’s not personal. Leakers constantly experience their symptoms, there’s rarely any escape from them, except sometimes when lying down. So when you find yourself living with Jekyll and Hyde (happy one minute then angry or depressed the next) it’s not personal. Think how you would feel in their shoes. I know I would not have been half as graceful as my husband has been. It can be trying when you’re doing your best and you get grumped at, but they’re living with it in their head 24/7 and it’s a living hell. We chat about it and work it through and it doesn’t become a big issue. In some ways I feel honoured he can show me his vulnerability as I know with many others he has to put on his pain free brave face. Talk, discuss and be open. It’s an opportunity to deepen your relationship.
Find your good friends. Most people live busy lives these days and many will struggle to find the time to really listen to what you’re going through or will struggle to comprehend how your life has changed. I’ve found it hard to talk to people as most have so much going on in their own lives they don’t have the space to listen to someone else’s woes. Get used to platitudes such as “I’m sure it’ll all work out” or “focus on the positives” when you’ve just poured your heart out. It can be a bit of slap in the face, but they mean well and in all likelihood they’re probably right. I know it would just be nice to have someone who really gets where you are at and understands your feelings. Try not to waste energy getting upset or frustrated with them and instead appreciate the friends that do have the time to really listen. It’s really important that you get support and someone to talk too. It can be a scary and upsetting journey for those accompanying leakers, not just the leakers themselves, so being able to share that with one or two good friends is important. If you find that hard may be try an independent counsellor. Keeping yourself sane is vital to supporting your loved one. You’re on the same emotional rollercoaster, yes, but you’re the one who is able to step off, even if it’s for just five minutes, and it’s key to keeping strong.
Get used to repeating yourself. Having said all the above. you will get a lot of “How’s such and such’s headaches?” No amount of explaining and re-explaining the list of symptoms seems to penetrate even the most kind hearted of souls. Despite living with someone with a leak for almost a year now, even I don’t fully understand what it’s like for my husband, so I can’t expect others to either. I think it’s a common occurrence with ‘invisible’ illnesses. I just take a deep breath, smile and say “Well, he still has blurry vision, popping ears, tinnitus, palpitations, wonky blood pressure, his head feels like it is vice and yup, he still has headaches too”. Maybe that sounds like I’m being melodramatic, but I believe being honest with people and highlighting how debilitating this condition is important not just for my husband, but for other sufferers out there as well. They don’t have the energy to always fight their corner, many of them can’t get out of bed, so I believe strongly that anything I can do to highlight how huge an impact a CSF leak has on people’s lives is a step forward.
Treat yourself. Looking after yourself if key. It’s an emotionally draining marathon, so anything you can do to relax or take time out is important. For me that’s going up mountains, biking, skiing, yoga, shiatsu or massage. Just do what makes you happy. The only down side to this is you might feel guilty. My husband and I used to do (and will do again I’m sure) all of the above, so when he’s left at home and I’m out having fun I feel guilty; but I know he wants me to have fun and I need to have this time out so that I have the resources to stay strong for other times.
Tell your employer. Make sure that your boss and colleagues are aware of your situation at home. I have a great boss and very supportive colleagues. I’ve had time off when I’ve needed it and I keep them abreast of where we are at. It is important that folk at work know what you’re going through. Work can be a nice bit of normality when your home life is upside down, but it can also add unnecessary stress. Remember most work is not life or death so that deadline or meeting can wait. Your loved one is more important.
The NHS and Government Support
Go to all of the appointments. CSF leakers are constantly experiencing their symptoms, it can be oppressive and unrelenting, and this can make it a struggle just to remember things. By going with them you can take notes, remember to say things or ask questions they might not and help them remember what was said afterwards. It also saves them having to repeat what the doctor/person said to you or others afterwards. They’re already tired, so helping them get to and make it through appointments and interviews is important.
Keep written notes. Keep a log of their symptoms, keep it brief and take it with you to all appointments. If possible, do it electronically so you can print out as many copies as doctors may need. Leakers might not have the energy to do this or may not be physically able, so if you can, it’s a help and important as many medical practitioners will not have come across this condition before. Keeping the notes brief and to the point is important in order to get the message across, as most appointments have limited time.
Go private if you can. The most important thing is getting an NHS referral to the right person as soon as you can. Most doctors will not know about this condition and even if you do get your loved one referred to the right person, it’ll often be put down as routine, not urgent, and can take months. Instead, for the sake of about £250, you can often save yourself a lot of frustration and stress by going private for the initial appointment, then asking to be slotted back into the NHS. You will still need a G.P. or consultant to provide the initial referral, but if you ask for a private referral they cannot refuse you. It best to get referred to a doctor who also works in the NHS, so that once seen privately you can then decide to pursue things either with the NHS or continue privately. It took us 10 months to get to where we are. We knew within two weeks of my husband getting ill what it most likely was, but no one seemed to take us seriously. If we’d just gone privately at the beginning, then we would have been seen within a week or two and saved many, many months’ worth of stress and frustration. In some areas, a private appointment may be at a private hospital too for a leaker Try contacting some of the private consultants listed on www.csfleak.info as they’re known to have CSF Leak experience.
If you’re in Scotland, England or Wales, click here for more information on private referrals and their integration with the NHS. For private healthcare/NHS integration in Scotland, you may also wish to check out this document by the BMA providing guidance to doctors.
Keep phoning and pursuing. Hospitals are busy places, particularly those run by the NHS. If your loved one’s case doesn’t seem to be followed up, phone them up to chase. Most hospitals seem to have appointments/referral lines which you can phone to find out where the referral is in the system. If they haven’t received it, go back to the referrer, be it a G.P. or via a consultant’s secretary. Things can go missing or take longer than they should. He who shouts loudest does often work, but remain polite, be understanding of their workload and try to act in such a way as they won’t consider you a pest.
Become best friends with the consultant’s secretary. They are the gate keepers. They can help sort appointments, smooth the way with referrals and expedite any queries you might have for the consultant. Some consultants accept direct emails from patients, but many understandably do not. So be nice and polite, despite it being the 10th phone call you’ve made that day. They’re busy people too, so keep them on side and they’ll do their best for you.
Develop patience. I’m one of the most impatient people on the planet, but everything takes longer where a leak and the NHS is concerned. The NHS is busy and under resourced. It’s not the fault of the staff, it’s just the way it is right now, so try not to waste precious energy on getting frustrated with it. Everyone is in the same boat as you and on the whole staff are doing the best they can with limited resources. That said, getting an initial private consultation (see above) with a good consultant is worth it to save some time and you can cut out some of the NHS sluggishness by doing this.
Filling in forms. Applying for a blue badge or Personal Independence Payment is painful even without CSF leak symptoms, so I’m afraid it’s probably down to you. It took me half a day to do these as the questions are not geared to someone with a neurological condition. You really must talk through the answers to make sure you can explain all of the implications of CSF leak symptoms in a clear way. Do not assume at all that the people assessing the applications will know what you’re on about – they won’t. Go into the detail. Explain every symptom, every disability and every life limitation. Without this information you might not get these benefits, not least given leakers often looking completely ‘normal’, fit and healthy from the outside. We were turned down first time round for a blue badge because we didn’t highlight the bad days enough. If form filling is hard for you ,then pop into your local Citizens Advice Bureau as they can often help you or support you when filling out the forms and making applications. Plan what you want to say in an application and then say it well.
I hope the above is of some help to CSF leakers and their families. I may well update it as our journey continues. Whatever else, I see the situation, as difficult as it is, as an opportunity to get a new perspective on life and appreciate the things in life that most of us take for granted. Always try to see the positives in the negative – and there are always positives!
Privacy: The names of all individuals mentioned in this article have been altered in order to preserve anonymity and maintain privacy. Any similarities between the experiences expressed in this article and those of real life people sharing those names is entirely coincidental.
Territorial extent: This article relates to experiences in Scotland. Please note that there may be differences between the healthcare processes and other support services in Scotland and those available in other parts of the UK and Ireland.