• Coping with a chronic illness

    If only I could pretend that everything is fine. Real life is never easy, not to mention when we are sick. Most days I am OK and I can deal with my symptoms, but very rarely there are days where I can’t cope at all. Where I hate that this ever happened to me. Over the past 3 years these days have become less and I have far more control over what is happening to me. I know that if I’m having a bad day, tomorrow will be OK. I remind myself of the hope I have been given to get better. An amazing family, friends and dr. I always have something to aim for. Whether that be an appointment or a visit from friends. I am now at a point where I can get out into the fresh air and do some yoga. This all helps me hugely – physically and mentally.

    Living with any kind of chronic illness has a huge impact on quality of life. Over time you learn to accept that it is how it is and you just have to learn to live with it. Making the most of what you have, not what you don’t. My symptoms from gastroparesis and SCD have overlapped in some ways (the nausea and vomiting), and over time I have come up with a few ways of managing some of the symptoms I experience.  I’ve had a few messages from those of you suffering from balance problems recently (which I love!) and thought it might be useful to just share how exactly I manage some of my symptoms on a daily basis. None of these things are perfect and 100% going to work, as we are all so different and individual. But I personally think anything is worth a try, especially if there’s a chance it might help YOU! It’s all about trial and error when it comes to symptom management, and a lot of perseverance. Stick at them and see how you get on!

    I firstly wanted to say that one thing that has NOT helped me with my dizziness (although may make you feel better in the short term), is to just stop moving. From experience, this has really not helped me at all. Ever since my SCD was fixed, the more I do, the better I feel in the long run. Don’t get me wrong, moving around more makes me exhausted and dizzier but over time I’ve noticed how much better and stronger my balance is. I guess this is what vestibular therapy is all about as it’s aimed at making movements that allow our brains to recalibrate and compensate for vestibular loss. So, my first advice for managing dizziness is to keep moving. Even on a bad day, however small that movement might be. For vestibular therapy I highly recommend you get some specialist  medical advice for this as its so individual and you need a specific plan that works for you.

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    Never easy to fight through dizziness and sickness

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    Use a walking aid if you need it. My vestibular therapist recommended a hiking stick!

    If moving more and vestibular therapy is making you really sick, it’s really important you take a step back, speak to your therapist/doctor about it and bear in mind that your program might simply be too advanced for you. There could also be another underlying issue which is stopping you from progressing.  Just over a year ago I was given a VT program which was way to advanced for me. My awesome therapist in Boston made me realise how simple and small movements should be when your balance has been out or whack for a long time/ had major trauma like surgery.

    I know moving is a lot easier said than done, as I know first hand how hard it is to keep moving when this only makes you feel worse. My routine literally consistes of pottering around the house, but this has already been enough to see pretty big improvements in my balance. Of course my surgery played  a big part in this too, so be sure to get medical advice from your doctor about any treatment you might need to help you get back to moving around again.

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    Make the most of what you’ve got. I don’t let me drip stand stop me doing what I love!

    This brings me to my next point, which is making sure you find a great doctor. One that is specialist in your condition and who has adequate experience in treating it. You need reasonable treatment options, whether that be medication, vestibular therapy, surgery or referring you to another expert. Please do not give up and get 2nd and 3rd opinions if you need to. I had around 5 opinions for my dizziness! Don’t be afraid to ever speak up. You know your body better than anyone else.

    To help you understand your condition and meet others in  a similar situation I recommend you join a support group. This has hands down been one of the best decisions I made when it came to my SCD diagnosis. Sometimes these groups can be a bit much and even negative, but overall, what you learn from other people living with the same condition is invaluable. I’ve also made some amazing friends from all around the world, who I can’t imagine life without anymore !

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    One of many special friends I’ve met on this journey

    Pace yourself. With all I was going on about with the moving, it’s also really important you don’t over do it, as from my personal experience, this can set you back for days. Set yourself goals for the day/ week but don’t beat yourself up if you don’t achieve them. I like to make a goal like baking something in the kitchen and that will be it for the day. If I can do extra things like see friends, then that’s a bonus! But all of these things are exhausting and please remember this is completely normal when you have either a balance problem or gastroparesis (or any other chronic illness for that matter!). Our brains are having to constantly work extra hard. This brings me to my next important point which is making sure you get enough rest.

    I nap most days, only for about 10 mins or so but it’s enough to recharge me to some extent.. If I can’t nap, I have got into the habit of listening to something relaxing, or even doing some kind of mediation ✌🏼 I was a bit sceptical of this at first, but it really isn’t as hippy as it sounds and can take you off into dream land which can bring you a burst of energy at times. I like the short videos by The Honest Guys the most (You Tube them!). Other things I use to relax is my awesome oil burner, hands down the best gift I’ve been given since being ill! Beats a candle any day and makes your whole room smell amazing. Have a bath. Light your oil burner. Use some fancy beauty products. And relax…

    How I ease nausea. To be honest, this doesn’t work 100% for me but some days the following things do give me some kind of relief. This includes ginger – I use this in my oil burner and also use the fresh stuff chopped up with hot water and lemon. This gives me a real ginger hit and sometimes has the power to ‘dampen’ my nausea. If you can’t stand ginger you could give crystallised ginger a go as it’s a less blow your head off way to get it in your system… you can also get ginger capsules.

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    Shots of ginger

    I have also switched from drinking cold water to having it hot from the kettle. For some reason I find this easier to drink and it settles my stomach. Eat little and often if your having a bad day! This is key for me especially with having gastroparesis. I don’t eat proper meals anymore, just snack as and when throughout the day. For particularly sicky days I find the following food and drinks to be a winner:

    • Dairy free milk
    • Apple purée
    • Dry crackers (like rice cakes)
    • Grapes
    • Mints
    • Dry cereal or porridge
    • Ginger tea
    • Well cooked veggies

    On a really bad day I try not to fill my stomach with food and drink with little nutritional content (like tea and coffee), because in my opinion this is just a waste as it fills my stomach and hasn’t actually given me any goodness at all. I have now taken to things like super smoothies or cold pressed juices, which are FULL of goodness and taste amazing. Make every bite count.

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    GREENS

    It’s so hard to know what and when to eat when your constantly nauseous and what works for me may not work for you. It’s taken me over a year to try and work out what I can and can’t do but it’s worth trying some of these things to see if they help.

    Try alternative therapy. Don’t get me wrong, I truly believe that conventional medicine is essential in managing chronic illness such as balance conditions and gastroparesis, but sometimes our bodies need a bit of extra help. Especially if conventional medicine is not enough on it’s own (if your anything like me, you will not get on with medications!). Acupuncture is proven to help those with nausea and vomiting and is also a really relaxing experience. My most recent discovery is with a specialist chiropractor up in London, who uses a treatment called NUCCA to help realign your spine. Although this does not directly treat symptoms, the overall effect can put your body in a far better position to heal. This chiropractor is also a vestibular therapist and more than half of her patients have vestibular problems. Having a doctor who takes a holistic approach to healthcare has been invaluable for me as she is teaching me how to care for my entire system. Be your own health advocate. Educate yourself on your condition. Fight to find the best health care professionals to support you and advise you on managing your symptoms.

    Always keep hope. Don’t get me wrong, I know how hard this is sometimes. Trust me, I’ve been there and still am there sometimes. But tomorrow always brings another day and you always need to remind yourself that someone WILL be able to help you. I am not saying we can all be cured (some of my health conditions are not curable either), but they can be managed. For me it’s been all about learning how to manage my care with the help of conventional and alternative medicine. Balance conditions are so debilitating and there really isn’t enough awareness or care for patients. All the people I’ve met have had to fight SO hard to get an answer, and have often had to travel far and wide to do so. But from what I’ve learnt there usually is an answer, and most importantly, someone out there who CAN help you. Don’t be afraid to reach out to other people/ support groups/ health care professionals for guidance. The same goes for gastroparesis as again this is a condition that is fairly unknown. It’s complicated and not straight forward to treat. I’ve had to really think outside the box with this one, do my own research on self healing, as well as reaching out to others for advice on what to do. None of it is easy, but the more you learn about your condition, the better position you’re  in to getting the right help. It also gives you some control over what is often an incredibly stressful situation. Especially when your health is a bit of a jigsaw puzzle and you have multiple things happening.

    Stay focused and believe that you will get better. Make the most of what you have right now. Keep your loved ones as close as you can as they are the ones who will stick by your side what ever happens. Take control and reach out to get the best possible care for YOU. Because it’s out there, somewhere! Make your dreams a reality.

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    Be proud of what ever you do achieve 

     

     

     

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