Wobbly walker

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.

Fear and Anxiety

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 .

 http://www.nhs.uk/Conditions/stress-anxiety-depression/Pages/free-therapy-or-counselling.aspx

Dreams

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

Vestibular Rehabilitation

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. 

Alison's story

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?

Treatment programmes for Balance Conditions

Since my last post I've had lots of appointments for various things and not been as well. I've not been sleeping very well and suffering with migraines,  so it's had an impact on the balance condition. It just makes it a little harder to focus, concentrate and feel less confident about getting out and about. It's all part of having Vestibulopathy with visual preference. It's  a minor setback and I'll get back on track.

I hope you remember my last post. If you don't -go back and read it and watch the video. You will see Consultant ENT surgeon Professor Rea talking about balance conditions and dizziness. He talked about the often dramatic affect it can have on people’s  lives.. It's not all bad news I might add even though it can be a long process, help and treatment is available.

In this video, Professor Rea explains what that help entails .

Recovering from a balance condition requires a lot of hard work and effort on your part, making sure you do the exercises you are given. I want you to see the type of exercises you might have to do from a vestibular physiotherapist. So I'm going to be talking to the lady I see. In the next few posts I'll be bringing those to you.



I’d really love for you to share your story with me – your journey! So I can share it with others. Professor Rea’s interview prompted a lot of you to get in touch privately. If you feel you can talk about it and would like to be a guest blogger, please do get in touch. Leave comments below, or seek me out on twitter @rupalr . Some of the people that have messaged me privately don't feel comfortable doing that and that's fine too.. I know for me , it seems to be helping. I don't feel so isolated, or as misunderstood . In fact I've noticed people/friends have become more considerate in how they behave with me. I don't have to try and explain what it is and how it's affecting me. They know, because they've been reading the blog. Which for ME, is a bonus. They know it's nothing sinister but know my limitations too and I don't feel as panicked about having to try and explain why I might not be able to do something. It's been really useful to write things down.

There are always going to be people who just don't get it, or just can't be bothered to take the time to find out what you have and how it affects  you. And you know what - I say- let them go! You really do find out who your friends are when your going through tough times. I certainly have.  I've also discovered those that are true friends.  I have an extremely supportive family and those close to me who are there when I need them.

Balance conditions explained

How many people have you known to have a dizzy spell, or suffer with a balance problem? Probably more than you think. There are so many causes and reasons why someone may experience dizziness and issues around their balance. As you know I have a condition known as Vestibulopathy with Visual Preference. I know others who have it too. Many people suffer with dizziness due to Migraines. There are other conditions such as Labyrinthitis ,  BBPV and many more .

But just how big a problem is it here in the U.K.?

I've been lucky enough to speak to MY consultant -Professor Peter Rea, who is a Consultant, Ear,Nose and Throat surgeon in Leicester. He runs one of the biggest balance clinics in the U.K. where people travel from all over the world to see him. Surgically he works at the Leicester Royal Infirmary and privately at the London Rd Clinic in Leicester.

I'm going to let him explain what some of the conditions mean and the impact it can have.

There will be more from Professor Rea in the next blog too. He'll talk about treatments and advice if you're suffering with dizziness / balance problems. You can find out more about some of the conditions here. http://www.nhs.uk/Conditions/dizziness/Pages/Introduction.aspx
The London Rd clinic -/http://www.londonroadclinic.co.uk

And before I go , I must apologise for the lighting issues in the video. I'm learning about filming correctly as I go, hopefully the next video interview I do won't have as many issues.

Please feel free to share and or leave comments below.

Feedback

Firstly I want to thank you if you got in touch following my first blog post. I was overwhelmed by the number of people who know me and many who don't , that got in touch. It's meant a lot.

Most importantly though I want to thank you for getting in touch with your stories.
Here's an extract of a message I received from a lady who wants to stay anonymous.

“Hi Rupal,

Apologies for the random message but a friend recently sent me through your blog and I wanted to reach out privately as I felt that you've literally put every moment I'm going through into words.

I was diagnosed with vestibular migraine around 3 years ago after 6 months of seeing GP's and suffer from the same symptoms as you. It's been a horrible life-changing experience that I haven't been well-equipped to deal with. I left a great job and have really bad agoraphobia now such that I do not/ cannot go out on my own. I've been on various medicines over the last year after having seen a specialist neuro and I've recently discovered they've actually been making me worse. These days I consider it a good day if I can stay out of bed all day because of the constant dizziness and weakness.

Without continuing to whinge, it was great to read your blog and I've actually passed it on to my family and friends so that they can understand what I'm going through as I get the feeling at the moment they just think I'm being too weak.”

That's quite a profound statement from a stranger who is going through something similar.
I know, I'm not, and I know the lady concerned isn't after sympathy but just some understanding of what it's like living with such a condition. Further conversation with the lady proves she is positive that things will get better. it's the life changing impact it can have on a person I want to highlight.

If you're reading this post and thinking it's all a big fuss about nothing or you're not sure what the condition is and how it affects people, I have some great news. I've been in touch with my consultant and he’s agreed to be interviewed for one of my posts. I hope in the near future to share that interview with you.

Living with a balance condition can be hard, because you have to think about everything carefully before you do it. Each day can be so different. You can feel great one minute and feel lousy the next. If you have a cold or the flu it can make it worse, if you've not had enough sleep , it can make it worse. If you have other health conditions it can also make it worse. The biggest problem for me is the physiological affect it’s had. . You can become fearful- of going out, being in big crowds, crossing a main road, going shopping, most things in fact. When I am out , trying to walk in a straight line is rather difficult as I try to focus on doing just that . I'm told I look like a someone who’s had quite a bit to drink.
So when it happened the second time round I thought  I'd be better equipped to deal with it. Sadly not! I ended up having an ear infection, then the doctors thought it was labyrinthitis, so I was  signed off from work for a few weeks, which then turned into months and now almost a year. I went to work for the first three or four weeks but I couldn't drive and couldn't get across the main road, so I was getting taxi’s to and from. I work for a radio station so I would just about manage a few hours on air and then go home. It got to a point I just couldn't do it and was signed off and here I am almost a year later,  at home.

The day to day challenges – just getting around without the fear of falling or banging into things. The attention you have to pay to things because your brain can't focus properly, the stares you give people because your trying to pay attention,. Watching tv , getting in and out of the shower. Standing up , sitting down . Trying to carry things and walk at the same time. Now that is difficult. And if it's more than one thing you're trying to carry that really is a challenge.Think of a toddler who’s learning to walk with a toy in its hands. How much concentration do you see on their face as they try to walk and carry an object at the same time. How often have you seen them fall and learn to get back up again. It's a little like that I guess. Having said that I'm a lot better than I was. I can do some of the things almost like before. Every time I am able to do something I couldn't, It’s a celebration. A little victory all of my own. I see a balance physio on a regular basis who is helping me with trying to re-train my brain. I'll tell you more about that in another post.

For now though if you have questions, comments, feel free to ask in the comments section below.  If you feel there's someone you know who might benefit from this blog , please share.

Balancing act

Imagine - You're  standing perfectly still but your world is spinning around you. I don't mean figuratively but literally! You need to hold on to something to stop yourself from falling. You feel sick , you can't focus properly and your start to panic , your mouth drys up and you can't swallow.
 If you sit down, It’s not so bad. Bright lights affect your eyes, big screens , lots of noise , too much traffic , too many people all make your head go dizzy and you can't understand what is going on. You start to get confused and all you want to do is shut the world out and cry.

Around 6 years ago – I was diagnosed with something called VESTIBULOPATHY WITH VISUAL PREFERENCE. Caused, they say, by damage to the inner ear. So it not only affects your balance but your sight too, because the brain has to re- learn  how to balance and focus again. It took a while to get a diagnosis but the relief I felt when the ENT (ear,nose and throat) consultant told me what it was, was incredible., I just cried, in fact I sobbed in his office.
 For the first time in months since it first started someone understood exactly what it was I was going through and it all made sense to them. For months before that I was back and forth to the GP who thought it was stress, then depression and had signed me off work with that and told me to go have a holiday.  A bit difficult to have a holiday when you can't even walk in a straight line or get in the shower without help. 

  

I just want to share my experience of this condition because there's not a great deal of information out there unless you know where to look. I want to hear from you  about how it affects you on a day to day basis . It's not a life threatening condition as such but it certainly does turn your life upside down in every way. I became too scared to go anywhere, to be on my own and places I did go to , I did with caution.
That time it affected me for almost a year. I had to take 8 months of work. It never disappears but you learn to deal with it. Until of course you get another bad infection and it comes back with a vengeance. And you have to start all over again. Which is where I'm at right now. It doesn't seem to be any easier knowing what I know from the last time, I guess panic sets in and all the fears of falling and hurting yourself and people just not understanding come flooding back. After all it's not something you can see - it's not like having a physical injury or disability that’s obvious. The amount of times people have said  … “well you don't look ill- in fact you look really well” 

I'm hoping to share via this blog not only my story but stories of  others that I know have the condition, and maybe talk to the professionals I've met to get a better understanding of it and how to deal with it. 

I’d love for you to share your thoughts and this blog to others who maybe going through it, and often feel lonely, isolated scared and confused.