I’ve done it again haven’t I. Left it for far too long to communicate via this blog. I’ve genuinely wanted to write something for ages but life is just taking over. I can’t remember if I told you that I left my job. It’s one that I’d worked in for about 29 years. It was a hard decision, a heartbreaking one in fact, but you know what, it is probably one of the best things I’ve done in a very long time. Suddenly the pressure was off in one respect and another of course it meant financially things were going to be difficult. Since October 2018 ,thankfully, things are ticking along nicely. I’m now freelancing at the same place doing what I love ,but now ,I can pick and choose if I’m able to do the work when it’s offered.
The pressure’s off so I’ve been able to concentrate on getting better, working with the medical psychologist, the vestibular physiotherapist, and generally some amazing people that are part of my life. Without them all, it would be a harder journey.
It’s been sooo long since I’ve written anything. I apologise for that So much has happened in that time I really don’t know where to begin. A trip abroad for a friends wedding was a real high. Considering I didn’t know how I would be during the flight or how I’d cope , I had an amazing time. Poland was fabulous. The wedding was amazing and so was Krakow. I managed the flight which I was so fearful of. Only minor panic and dizziness during the flight. I was so pleased with how I coped. I couldn’t have done it without the other half though. Everything was done at my pace, with lots of breaks , rest time and an arm to hold on to. If you’ve been to Krakow, you’ll know most things are accessible only by foot. So armed with my husband , a walking stick and sunglasses we managed quite a bit of sightseeing whilst we were there.
I felt so relaxed and ready to take on the world after that trip back in August of last year that I decided it was time to go back to work. Sadly the work environment and short phased return didn’t work out and it not only has knocked my confidence, but led to things going downhill for me emotionally, to the point of not wanting to see or speak to most people that weren’t part of my inner circle. I went to see the doctor who wanted (and still does) want to give me anti depressants. It’s not an option I’m ready for just yet. I’ve been seeing a medical psychologist at one of my local hospitals who id rather work things through with.
I think I’m coming out of that phase slowly. I’m starting to re connect with people and trying not lose hope and feel drowned in everything that’s happened over the last two years.
I have connected with some amazing people who have been such great support to me, including a lovely lady called Toni Robinson. She’s offered lots of help and advice on work related issues. As someone who works in HR (Human Resources) she agreed to do a Facebook live session with me around your rights at work and your employers responsibilities to you. If you fancy watching it it’s on YouTube or my -Living with a Balance condition page on Facebook . https://www.facebook.com/livingwithabalancecondition/videos/1989159498000374/
I’m also talking to the Menieres Society about creating some videos for them. So watch this space for more information in the coming months.
I’ve realised that there is a real need for a support group where I live in Leicester for people with vestibular conditions as there isn’t anything here as such for people like me to be able to share/vent/meet like minded people, so it’s something I’ve been looking into with the help of a local disability group. In fact Laura Horton from LCIL (Leicestershire Centre for integrated living) has been amazing in supporting the idea and offered me a venue and lots of great advice . I also recently attended an event to gauge interest that they had organised. I have been slightly slow off the mark about getting the group going, I think mainly because of lack of confidence and being unable to focus on any one thing for any great length of time. I know it will happen, but it might take a bit longer than I first imagined.
I’ve had some interesting conversations with my vestibular Physiotherapist too. I have to say she’s fab and very patient with me. I tend to see her every two months . I have been feeling better on the whole as far as the dizziness is concerned. I’m trying not use a walking stick as much and rather than wearing sunglasses (even when it’s not sunny), I’ve been wearing my distance glasses which are anti glare, so I don’t get accused of trying to look cool, or like I’m a star or something. Lol! ( it has happened, and it does make you more conscious) I digress, so my conversations with Michaela have in recent months concentrated on how much Vestibular condition CAN and DO affect you emotionally and how much that can then affect you physically. A vicious circle if you don’t deal with it. ie: even though you may start to feel better physically, the emotional stress and anxiety of a vestibular condition can bring on symptoms and you end up going round in circles. I’m not sure if I’m allowed to say, but I know she’s working on developing a programme to help patients tackle these issues.
So with this in mind, and also knowing how much the anxiety and stress can affect someone I’ve decided to do another Facebook live session with psychologist Nagina Parwez answering your questions on how to deal with it. Methods you might try, or have tried that have helped you. Do make sure you join us on the 4th of June. Here are the details .
Finally for now I forgot to mention I went to see the Neurologist who has suggested that I have a condition called Hemicrania Continua. Rather than a typical migraine this is slightly rare. https://www.migrainetrust.org/about-migraine/types-of-migraine/other-headache-disorders/hemicrania-continua. And there is only one treatment for it she says. A medication called indomethacin. A medicine I’m yet still to try out of fear more than anything else. Maybe I’ll explain why next time… it’s too long a story for now.
As always thoughts ,comments and how you’re getting on with your vestibular condition welcome.
Speak soon I’m sure and don’t forget the Facebook live session on June the 4th 2018 . Just look for Living with a balance condition page.
I know it’s been a while since I posted anything. So much has happened since then. I just haven’t been able to focus long enough to write things down. What I CAN tell you is that most of it is positive and I promise I’ll fill you in soon.
I can tell you that I've set up a Facebook page along with the blog -where I'll share these blog posts but also do some Q@A Facebook lives with specialists and professionals. So do join me on my page. https://www.facebook.com/livingwithabalancecondition/
Today, more than anything I wanted to share Phil’s story with you. His dizziness started following treatment for Cancer. His story is below, in his words.
Phil Johnson
For me the problems started not long after I started radiotherapy and as I thought the radiotherapy was going to kill me, being a ‘wobbly walker’ was small beer! I underwent 33 consecutive sessions of radiotherapy & virtually ten weeks on the settee recovering from the horrendous treatment that it is. Once I got upright again I used to totter off to the post-box some 80yds away. I was slow, my God I was slow but I kept veering off to the right, people all giving me funny looks as if they thought I was drunk in the middle of the day! Horrible.
I used to ‘walk’ on the right hand side of the path so that I could brush against garden hedges and ‘touch walk’ along the 3ft high wooden fences – until one day I completely forgot that some fool had removed his fence so as to get his car out and not put it back in place. Bang, me on floor and in his garden feeling completely stupid and the usual gaggle of idiot children laughing at me. Enough was enough-back to the hospital to see what the hell was going on.
Now get ready for the bombshell. The radiotherapy has caused my eyes NOT TO BALANCE properly (“vestibular something or other”). Yes I did endless ocular exercises but they didn’t get me anywhere really and I found that I was 500% safer by simply using a walking stick. That bit of wood was a new lease of life to me I can tell you and it brought home the total truth of that saying, “not all disabilities are visible”. Well I have two of those now as my neck stoma is always covered and my walking stick disguises my ‘wobbly walking’.
The funny thing now is that although I am slow & deliberate, people look at me as if to say “you’re a fraud, you don’t need a walking stick”. Perhaps they might change their opinion if I ended up in their front garden! I find this situation deplorable as 10yrs ago I would be galloping about here, there & everywhere but now, after cancer, chemotherapy & radiotherapy I am a shadow of the man that was…..but I am still here! As a ‘wobbly walker’ I have got used to funny looks and simply accept that people move to the side so as, not to avoid me, but to allow me free passage as they obviously realise I am troubled with walking.
I think that although the radiotherapy was a must as I had throat cancer, thus massive surgery to be rid of it, the radiotherapy side effects were, at times, horrendous. For instance, all the skin was burnt off my neck, I could hardly swallow, taste or smell and I could only totter around the house by holding onto furniture, door handles and my darling wife. I was determined to go outside but I found that our garden (147ft long) was like walking to the end of ‘Southend Pier’! The hospital gave me a strong walking stick and taught me to concentrate on climbing 3 steps, then 4, then 6 etc. That gave me confidence to use the stick outside for I’d felt like a geriatric old fool up to that point but I realised that this was now the new me.
I now also have COPD which restricts me even more but seven years past that awful surgery and I am just what I am, a cancer survivor and a ‘wobbly walker’, except that now I don’t care what people think for I know that there are very few that have gone through what I have gone through & even less would ever want to! I’m a proud ‘wobbly walker’ these days for we are whatever we are!
Phil runs the 2020 voice cancer charity in Leicester and they always have things going on that you can get involved in, so if you want to find out more http://www.2020voicecancer.org/
We will speak again soon. As always comments , thoughts or your reaction to my posts are always welcome.
If you’ve-ever been stressed, depressed or ill, you’ll know that along with it can come fear and anxiety.
And it’s fairly common with a balance condition too. Even if the condition improves , sometimes what can hold you back is the fear and anxiety. “But because I was really dizzy when I did this, it’ll happen again if I try to do it now” so you fear the worst even before you’ve tried it. You put yourself off, you let the fear take control. Natural for the mind to do really I think. You have a bad experience once , your brain automatically assumes the worse and you go into fight or flight mode…. With me it’s normally flight mode.
That’s why it’s important with conditions like Labrinthytis, BPPV, Vestibular Neuritis and Vestibulopathy with visual preference to try do as much as you can ( without putting yourself in danger of course) EASIER SAID THAN DONE HOWEVER…..
I’ve spoken to many people whilst writing this blog that have a balance condition and fear going out, fear getting hurt, fear going to work, basically they’re just living in fear of what might be or might not be- that includes myself!!!
Each time I’ve been to or spoken to my vestibular physio she’s said – if you need psychological help , get it!!! So after being on a waiting list with NHS for help for the last 7 months, I’ve now decided to see if I can get some help elsewhere. I’m truly fortunate to have found a lady who’s offered to help me for free.
Nagina Parwez is a psychotherapist , clinical hypnotherapist and provides stress management for organisations to help with the well- being of their staff.
She’s a contact I’ve made through a mutual friend.
I met up with her recently to ask her how you might deal with fear and anxiety . What follows is an extract of a much longer conversation I had with her.
Key points Nagina makes are – focus on the positive, look after yourself, and find a form of exercise that can help you and don’t be so hard on yourself.
As I said - this was just part of a longer conversation with her.
I took some of the advice on board this weekend . We had a wedding reception to go to , out of town . The first real big event I was going to go to in a long time and I’d been dreading it for months
And even though I was nervous and scared of how it would be and
how I would cope, I kept focusing on the positives and telling myself how well I was doing. My husband was with me so I didn’t need to worry. He was there to help if I needed it.
There were hundreds of people there, lots of noise , flashy lights and loud music. And even though I had some dodgy moments of dizziness and panic I was able to enjoy the evening much more than I think I would have done otherwise.
I’d love to know how much your balance condition has affected your state of mind and if counselling or mindfulness or whatever you’ve tried has helped you. So please leave comments below.
If you want more info about NAGINA – she can be contacted on 07414846897 or of course you can speak to your GP and ask them to refer you to a service suitable for your needs .
I had a dream the other night that really upset me. I dreamt I was trying to walk down a set of stairs and had managed to get only half way down. They were steep steps and were located in a large office / shopping centre. I was upset because I was stuck . I couldn't go back up and I couldn't carry on down. The space too big and I could see everything on both side of the stairs too.This made me feel really dizzy. The other thing that really upset me about the dream was I realised I was being watched by people who work at the benefits agency . It was part of an assessment to see if I could do it, or was i lying and making it up. What wound me up was that I wasn’t sure if they actually believed me. I mean, anyone could fake feeling dizzy and stop halfway down a set of steps and just say “I feel dizzy”. So how could I convince them I was honestly struggling to get down them.
I woke up not long after that but the dream left me feeling so low and down for the rest of the day I just couldn't concentrate. I felt sick to the pit of my stomach.
I’ve been to have a benefit assessment recently. And I can promise you it wasn't fun or dignified. I was made to feel like I had to prove I was telling the truth and somehow I had to convince the health professional how my balance condition affects me and how it differs from day to day. The worst thing was my husband had to take me to Nottingham to have the assessment in the first place. I couldn't have an assessment in my own city because the benefits agency don't have offices in Leicester that are situated on the ground floor. So, if I used the lift and needed to get out in case of a fire, I wouldn't be able to use the lift. Yes seriously this is how they work. So someone who's ill/ has a condition or is disabled or might not have anyone to take them to a different city further afield would struggle. I was told I could make a complaint, given an address to write to. Seriously who , when there not well and made to feel like a burden and a liar has got the energy to make a complaint. I certainly didn't. But it's not right!
I wrote the last paragraph a while back , since then the “system” has not failed to disappoint the bad impression I've got of them. I wrote the last paragraph a while back .After my assessment I received a call , saying I didn't qualify for the benefit I'd applied for because the person who'd assessed me hadn't scored me high enough points in certain questions of our meeting. Luckily the gentlemen on the phone asked me some more questions about things I can and can't do and was able to award me enough points to qualify for the benefit I was already receiving. That was the good news. The bad news - I'd have to go to the job centre and have one to one meetings with an advisor about looking for work. “But …… hang on . I already have a job !!. I'm just not well enough to go to work” I said. Unfortunately the way the system works means I still have to go to these monthly meetings in order to receive my benefit. Well – this makes sense. NOT!!!!!!!!
My first meeting with my advisor was an interesting one. I still asked why I needed to be there when I already have a job. The woman couldn't really answer my question except to say that many people need the support and advice in order to get a job. She asked if I'd considered voluntary work. Maybe that was an option she said. I said, I couldn't guarantee I would be well enough at the moment ,to do that and if I was well enough to do voluntary work then surely I'd just go back to work. To the job I already have!!!!!! You get the gist of how the rest of the meeting went. And obviously can't wait to go back there again!
So much has happened since my last post, most of which I can't remember. I've had a tooth out due to an ongoing problem that lasted about a year. It got infected so I've been trying to rid the infection and also the horrid headaches I've had as a result along with the dizziness being worse. I've joined a Facebook group that lovely Alison (from a previous post) suggested and it's been great to have a rant on there every so often. It's great for interacting with others who have a balance condition.
I've seen my vestibular physio again and had a rant at her. ( sometimes you just need to rant) . I've been meditating a bit more and practicing Mindfulness. Just a bit more than I would but not everyday.
I've been investigating taking Magnesium and vitamin B2 supplements for Migraines.
Ive been talking to a lovely lady called Hilary , who's been really supportive and Skyping me now and again with advice and her extensive knowledge on Balance conditions. And useful sites she suggested. Check out the Meniere’s website. It's a wealth of information. www.menieres.org.uk Also try www.vestibular.org.
I'm hoping to get a chat with a counsellor about how to deal with the stress and anxiety of a balance conditions in the next few weeks so watch this space.
In the meantime I've been busying myself with my chatty women too. A feature I used to do on my radio programme. As I'm not back at work yet I've been doing them at home. So if you fancy watching women sharing their opinions on love , life and the universe, have a look at my YouTube channel Rupal Rajani
As always leave comments below or find me on Twitter @rupalr
So what does it involve? How does it help with balance conditions, and what type of exercises will you have to do ? How do you deal with the anxiety and stress that comes with living with a balance condition. In this post you , you can hear from Michaela Burton who is a vestibular audiologist at the Leicester Royal Infirmary and at the London Rd Clinic in Leicester.
She is the lady who's been guiding me through my current situation and she's great. The most important thing I get from seeing her, is that she understands, she gets it you know! I don't have to pretend , I can talk openly and honestly about how I'm feeling. I can tell her about those little achievements and strides I've made but I can also talk about the bits I'm still struggling with. I've been told I also have migrainous symptoms and the last time I spoke to Michaela she persuaded me to go to see my GP to get that sorted. I've been and got some medication! (Whoop!) sadly I'm just too scared to take it. I know that if I don't deal with the migraines it'll affect the Vestibulopathy too , so I really do need to deal with the fear of taking new medication. I'm just not quite sure how yet but I'm working on it.
I have managed in the last few weeks to push myself to go to places that are extremely visually challenging. I managed to walk across a busy main road without using a stick, ( I may have felt sick after and dizzy) but I did it! I've been to the National Space Centre for a couple of hours as well. Now if you've never been there before it's certainly a visually challenging environment for someone with a balance condition. Thousands of people, dark spaces with bright lights, glass lifts to a number of different levels which allow you to look over and above at various space craft . The Planetarium- which I didn't go into. You get the picture . Well I was able to with help do some of it . I did feel quite ill during and after and had a long sleep straight after. But - I did it!!!!! Michaela will be pleased I'm sure, although she may say I should have just tried it for a much shorter time frame. Which I kinda of agree with. Too much too soon will probably just put me off doing it again soon.
Anyway- here she is with her wealth of experience, talking about Vestibular Rehabilitation.
I met Alison a few weeks ago when she contacted me after reading my blog and seeing the interview with Professor Rea. She wanted to get in touch to let me know what she thought of the interview but also to inform me that she'd shared it with others on various groups. We ended up meeting after that as Alison also lives in Leicestershire where I'm from. It was great to meet a fellow sufferer locally and really interesting to hear how the Vestibulopathy and her BPPV has affected her.
I'm pleased to say she agreed to write something for my blog- so this is Alison Pedley's Story
" My ‘dizzy’ journey started out like so many others, with a virus, back in 2004. It was mild and I recovered with the help of physiotherapy exercises. It reared its ugly head every now and then, when I was run-down or tired, but rest and more physio sorted it out without too much trouble. From 2006 I started to feel ‘off’ more and more and whilst driving on the motorway to Ikea one Sunday morning I had a bad dizzy spell. After continuing to experience new symptoms I was diagnosed with BPPV. I had an Epley manoeuvre, an amazing treatment where all you need is a couch and the tiny crystals causing a disproportion amount of trouble, were moved to a place they couldn’t do so much damage. I was unfortunately one of the people who has persistent and recurrent BPPV and over the following 2 years I did countless epleys, only managing brief periods of remission. Benign it may be but added to vestibulopathy from the initial virus plus visual preference, it caused me significant symptoms. I was becoming increasingly anxious, dizzy and housebound and basically desperate and finally agreed with my Consultant that I had reached the point where an operation was the next step. So I had my posterior semi-circular canal plugged. It went well but I found the recovery really tough. Every tiny movement caused severe rocking but after 6 weeks I was mobile again. But no BPPV and I was hopeful for the future.
The following year, when 4 months pregnant, I woke to severe room spinning. I was so upset and I needed a revision operation. The rest of my pregnancy and early months of my son’s life were difficult, I even had to manage an epley the day after having a c-section due to the awful dizziness. Anyway, when he was 5 months I had the revision surgery. Recovery went better initially but BBPV on my good ear, probably caused by the drilling from the operation, made for the 2nd worse day of my life. I could hardly walk into the Consultant’s office but after a horrific epley, could walk out unaided.
That second op was nearly 7 years ago, BPPV was still part of my life unfortunately, but thanks to the operation the crystals couldn’t get into their favourite and most troublesome hangout. So, I got used to the ups and downs and limitations of having a dodgy vestibular system. But I managed to work part-time, went on holiday, went on planes, got out and about a bit, had bad days but good days too. It was my new life, not one I would have chosen, but I accepted it and got on with it.
Now to the worst day of my life. On 5th April last year, 30 mins into a flight to Barcelona with my husband and son, I heard a bang in my ear and then the most violent and unexpected vertigo. I span out of control, feeling like I was rolling over and over down an endless hill. I screamed. It was incredibly scary and I didn’t know when it was going to stop. It lasted probably a minute or so but felt like a lot longer, then hit again. When it stopped I had awful vertigo, only being able to open my eyes for a few seconds at a time. I began vomiting and this was it for the rest of the 2 hour flight. My heart broke for my 6 year old son sitting 2 seats away. I was ambulanced off the plane and under advice went to the hotel where I hoped I would wake up feeling better the next day even though when I opened my eyes the room tilted and span. I could barely make it to the bathroom. I got home, I still don’t know how I managed that, experiencing the same bang and vertigo, though not as bad 30 mins into the flight. I had another set of balance tests once back and the results were ‘dramatic’. It has taken a year to recover and am finally feeling like I can get back to the normal dizzy me (never thought I’d be hoping for that!). My Consultant can’t say for sure what happened on the plane, there are a few theories but it’s left me with a few new symptoms including hearing loss and tinnitus. I cling on to the fact that it’s not happened again and am more than happy to follow the advice to avoid parachuting and scuba diving!"
We met in a busy coffee shop or tea rooms should I say, one that neither of us had been to before and it was slightly overwhelming with the number of people and noise. (Note to self) choose somewhere quieter next time! We both talked about the anxiety and stress having a condition like this can cause - yet we both were able to laugh about the coping mechanisms we both use....Alison has to have her chewing gum and I have to take my bottle water of water with me wherever I go! It's our security blanket if you like! They somehow makes us feel better. I wonder if it's just us or are there others out there who have a security blanket too?
