Whatever word you choose to describe it, dizziness is defined as “having or involving a sensation of spinning around and losing one’s balance.”
It is also a symptom that I have lived with since early childhood. The reasons for the dizziness is as a result of my neurological condition; a long-standing brain stem lesion. Although we know the cause of the dizziness, we are unsure of the reason why the dizziness and vertigo occurs, and what it worse we have no way to treat or cure this very life-limiting symptom. In the past I have tried various medications as well as undertaking vestibular rehabilitation exercises but unfortunately nothing has worked in even decreasing the severity of the moving sensations that I have to live with twenty-four seven every day.
Dizziness is not just an unpleasant symptom; it is also one which is life-limiting (Click to Tweet)
Dizziness can send you into a spin
This condition and the symptoms, such as the dizziness has changed me. It has also affected every part of my life.
Dizziness has not only changed me but it also affects every part of my life (Click to Tweet)
I cannot stand without feeling my body swaying due to the balance problems that the dizziness and vertigo causes; I find it difficult to be able to leave the house on my own due to the disorientation that dizziness and vertigo can cause. Some days that I am so dizzy and the spinning is so extreme that I am unable to get out of bed.
Through this whole experience and after living with dizziness for so long, I have come to learn how little dizziness and vertigo is understood within the medical community. According to some online resources, dizziness is one of the most difficult complaints to assess because it is a subjective sensation with many differing descriptions of the experience. Furthermore, doctors are also unable to directly and objectively measure dizziness. And mirroring my own experiences, patients complaining of dizziness and vertigo will see a number of different specialists, as dizziness and vertigo can be caused by a multitude of different pathophysiological processes, thereby making diagnosis particularly difficult.
As a result of it not being understood within the medical community, it is therefore also not understood within the wider community. That is why awareness events are so important. Now, there may not be an awareness week for my particular diagnosis, but the American organisation VEDA (Vestibular Disorders Association) is this week helping to raise awareness of Balance or Vestibular Disorders this week (September 15th – September 21st) of which dizziness and vertigo is a classic symptom.
The vestibular system includes the parts of the inner ear and brain that process the sensory information involved with controlling balance and eye movements. If disease or injury damages these processing areas, vestibular disorders can result. – VEDA website
Vestibular disorders can also include the following symptoms:
Visual-spatial problems
Clumsiness
Fatigue
Holding head in a tilted position
Difficulty in concentrating
Tendency to touch or hold onto something when standing
Poor hand-eye coordination
See this informative infographic from VEDA to find out more about these disorders.
There may not be an awareness week for my neurological condition anytime soon but I am happy to support an awareness event to raise awareness of a symptom that greatly affects my life. I may not live with a vestibular condition myself, but after living with dizziness and vertigo for so long, I can understand and empathise with those who do. So, I will help VEDA and stand in solidarity with everyone affected by dizziness, vertigo and balance conditions and do so whilst wearing my ‘Dizzy not Drunk’ t-shirt!!
I originally completed the ’30 things you may not know…’ meme back in 2012. However, I thought it might be fun to complete these 30 questions again, not only to meet new (and old!) fellow bloggers but to also see how my answers have changed during the past two years. It is true that as my condition has progressed and am now have the need for mobility aids such as a crutch and sometimes a wheelchair, my condition it could be argued is no longer invisible. To some extent this may be true, however, I have also found that when I do use these mobility aids I do so with suspicion from others because I look ‘fine’ and in their minds I have no need for such assistance. It’s as if they are expecting someone with a legitimate illness or disability to have a specific mark, branding them as such. It therefore does raise the question about what exactly defines an ‘invisible illness’ doesn’t it?
The illness I live with is… A neurological condition known as a long-standing brain stem lesion, as well as spastic paraparesis. However, there is some debate that there may be more going on and therefore am going through tests and seeing more consultants to determine this.
I was diagnosed with it in the year… 2010
But I had symptoms since… As long as I can remember, I am certain that I have had the stiffness and weakness in the legs since birth but went undetected for so long because I hadn’t realised that there might be a problem with my legs as I never knew anything different! The vertigo and dizziness started in early infancy also but the exact age I am unsure of but I was very young.
The biggest adjustment I have had to make is… Accept the limitations regarding my mobility and accept my need for a wheelchair. I am often incredibly stubborn and will refuse to use my wheelchair, and by the end of the day I am in a lot of pain as well as having trouble moving around because of severe weakness in the legs.
Most people assume… That because I am able to stand and walk sometimes when I have the wheelchair then it must mean that I am faking it all for sympathy or because of laziness. Many people need to learn that because a person uses a wheelchair does not automatically mean that they are entirely dependent on one.
The hardest part about mornings are… It has to be getting up out of bed! Fatigue is another symptom that I suffer as a result of my condition and therefore it is very difficult to get out of bed as I still feel so tired.
My favourite medical TV show is… It’s still has to be Grey’s Anatomy, although I am also addicted to Private Practice!!
A gadget I couldn’t live without is… This is a tough question as like most people I own several gadgets which are all so useful in my daily life living with chronic illness. But having to choose just one I would have to say my smartphone (Samsung Galaxy Note 3) as I am able to do so much with it and can be with me wherever I go. For instance, thanks to applications such as Facebook, Twitter, Instagram and Pinterest I can work on things related to my blog and keep in contact with fellow spoonies, which is fantastic on days which are struggle and need someone else to talk to. More than this I can take photographs, be reminded to take medications on time, play games, watch videos or listen to music – generally be entertained and distracted from pain, dizziness, and life from a chronic illness in general!
The hardest part about nights are… Trying to switch off from the pain and trembling that I experience in my legs due to the spastic paraparesis. I often experience insomnia because of these symptoms and it’s even been known to wake me up!
Each day I take __ pills and vitamins… 9 pills
Regarding alternative treatments I… Do not use any, as in my case the condition is not treatable even with conventional medical treatments, only can attempt to control the symptoms. I did enjoy a lovely and relaxing massage whilst on holiday earlier this year which I did find help with the pain
If I had to choose between an invisible illness or visible I would choose… An invisible illness could be more positive in the way that people are more likely to treat you as everyone else
Regarding work and career… I would love to have a career and full-time job but often worry if anyone would hire me due to the amount of time that I am unwell and also would question if I could hold down a job due to my legs giving way a lot and the inability to stand for long. Am also not allowed to drive due to the severity of the dizziness and vertigo, and public transport is not an option as it requires standing for a significant period of time
People would be surprised to know… That despite living with a neurological condition and dealing with severe symptoms everyday that I still manage to be positive! Many people expect me to be depressed because I am stuck inside of the house for most of my time, and so am surprised that I am positive and upbeat. Also, a lot of people love my positivity board which contains letters from friends, cards and posters with positive quotes and photographs of happy memories, all of which help me stay positive.
The hardest thing to accept about my new reality has been… I am not like everyone else my age and cannot achieve the milestones that I was once looking forward to, passing my driving test being one. Another example, is going out at night with friends, which I am unable to do due to the weakness in my legs, as well as the intense fatigue I experience at night. It has also been hard to accept that I may need to use a wheelchair as my legs keeps becoming worse over time.
Something that I ever thought I could because of my illness which I did was… It has to be going on a cruise. Not only did I think it was out of my reach due to the severity of the dizziness relating to my neurological condition, but also I never expected me to be able to handle it, but I did and looking back the holiday was a fantastic experience, and between you and me we have just booked to go on another one next year around the Canaries!
The commercials about my illness… Are non-existent as the condition is rare. In fact it is so rare that I haven’t met anyone else with the same condition.
Something I really miss doing since I was diagnosed is… Going on shopping trips with my Mum to our local city centre (Cardiff). Since my legs have become so much worse am unable to go as a lot of walking is involved as well as not being able to queue in the big department stores as my legs often give way. Also, large cities such as Cardiff can be very difficult for me to handle because of the dizziness, as it makes me very disoriented due to the large crowds, fluorescent lights in the shops and high ceilings and so on.
It was really hard to have to give up… Doing all the exercise that I enjoyed such as going on my exercise bike or going on walks as not only is it beneficial physically, I often found it helped with mental well-being. I also miss walking my dog as it’s something that both her and my Mum and I enjoyed doing together.
A new hobby I have taken up since my diagnosis is… Blogging and writing. If I had not ben diagnosed with this neurological condition then I would never have started blogging or meeting all of the wonderful people I have as a result of my writing. I also never would have had the opportunity to contribute to the inspiring digital magazine ‘The Pillow Fort Magazine’ especially for those battling with chronic conditions.
If I could have one of feeling normal again I would… Spend the whole day out of the house with dinner afterwards and maybe headed to a party after that!
My illness has taught me… To listen to my body, and that we all know when there is something wrong. To never settle when doctor’s are telling you there is nothing wrong when you know there is. To keep moving forward and to never give up until you find a doctor that will listen and is determined to find out what is wrong.
Want to know a secret? One thing people say that really gets under my skin is… “There are people much worse off than you”. Yes, I understand this but it still doesn’t help!!
But I love it when people… Listen to me and tried to understand even though it can be difficult due to the unpredictable and unusual nature of the illness.
My favourite motto, scripture, quote that gets me through tough times is… It has to be “Life isn’t about waiting for the storm to pass but learning to dance in the rain”
When someone is diagnosed I’d like to tell them… It is not the end. You still have a lot to offer just need to be open to new opportunities. You need to find a new normal instead of focusing on the past and everything that once loved doing but can no longer do.
Something that has surprised me about living with an illness is… Although that I do not know anyone else with the exact same condition, I am still not alone. There are many other people who experience the same struggles as myself and whom I can learn from and can support each other through the tough times.
The nicest thing that someone did for me when I wasn’t feeling well was… Sending me a care package with things that I love and a beautiful card to add to my positivity board
I’m involved with ‘Invisible Illness Week‘ because… To spread awareness of the difficulties faced when living with a chronic invisible illness; to educate people that although you cannot see the problem does not mean that it doesn’t exist. That people with invisible illnesses are not faking or are lazy and that we should be careful when making snap judgements about people. It’s a cliché but it’s true: ‘You cannot judge a book by its cover”. It would also be nice to connect with others living with invisible illnesses like myself for support and friendship.
The fact that you read this list makes me feel… I feel validated and supported so thank you!!
Every year in September VEDA (Vestibular Disorders Association) aims to raise awareness for vestibular conditions. They also aim raise money for research into these disorders which causes dizziness and affects the balance system.
According to the VEDA website:
The goal of Balance Awareness Week is to reduce the time it takes to diagnose a vestibular disorder. We help patients recognize the symptoms of a vestibular disorder and urge them to seek help from a professional specialist. We also encourage family and friends to learn more about vestibular disorders so they can support their loved ones’ who are suffering from dizziness and other debilitating symptoms.
Although, I do not suffer from a vestibular disorder myself; dizziness and disturbances in my balance is a large part of my life. Due to a neurological condition, I am constantly dizzy as well as frequent episodes of vertigo and as a result my balance is affected with these symptoms affecting my gait (the way I walk) and causing falls. Therefore, I understand and have experienced the loneliness, frustration and isolation these symptoms can cause and as a result I am supporting the ‘Balance Awareness Week’ (September 15th – September 21st 2014).
One way in which I have already shown my support for VEDA and raise awareness for Balance disorders is by purchasing a t-shirt designed by my great friend, Marissa. Marissa has been a fantastic advocate for everyone affected by dizziness and vestibular conditions. Marissa not only blogs about her own battle with dizziness and balance issues at her site Abledis.com, but she also founded ‘The Spin Sisters’ a podcast that discusses life with chronic dizziness and coping with a chronic condition. To find out more about why Marissa is raising money and helping VEDA, then you can read so by viewing her personal campaign page here.
There are two t-shirts available in the Balance Awareness storefront – one funky and lighthearted design that features the phrase ‘Dizzy not Drunk’. This is because many people who suffers with vestibular disorders often are accused of being drunk because it can result in an unsteady gait when walking which is also a sign of intoxication. The other design is a simple and plain design with the hashtag ‘Cure Dizziness’ and ‘Balance Awareness Week 2014’ underneath. The ‘Cure Dizziness’ design is available in adult (men and women) and youth sizes.
There is only six days left on the t-shirt campaign, so please if you can then purchase your own to show support for everyone affected by dizziness and balance disorders. These disorders can affect anyone at anytime and is something that could affect at you at some point. As Marissa says:
Rocking an awareness t-shirt means we all get to stand in solidarity with those suffering in silence… PLUS you’re getting a cool looking t-shirt!
If you aren’t able to get your own t-shirt then please help spread the word and raise awareness about such conditions on social media and help all those who are suffering with such conditions in silence. Awareness is a catalyst for a change so help and be a change agent!
As mentioned in my previous post, I concluded that in my opinion cruises are a perfect option for those with disabilities due to the excellent accessibility of cruise ships by large companies such as Royal Caribbean and the excellent care that the staff provides for those passengers with a disability. It is also preferable to using air travel because of the lack of waiting around for hours in a large airport. However, as the first post was a general overview of cruising with a disability, I wanted to write another post, writing about my own experiences of going on a cruise with a neurological condition.
[Tweet “Royal Caribbean does an excellent job in looking after those passengers with disabilities.”]
As regular readers will know, one of the main symptoms that I experience as a result of the brain stem lesion is dizziness and problems with my balance. As a result, I was hesitant about going on a cruise because of the severity of these issues that have increasingly become worse recently. In fact, a few days before leaving for the holiday, I was in floods of tears stating that I couldn’t face going on the cruise because of how sick I have been feeling. Furthermore, the attacks of losing my vision also came back the days before the start of the holiday, and as a result, I just thought that I wanted, or even needed to stay at home to be among the familiar surroundings and those items that give me comfort. I was frightened of these episodes occurring when in unfamiliar surroundings and somewhere where I do not know the layout. I was eventually talked round into going obviously and had to go anyway as it was too late to cancel without losing a substantial amount of money.
I so wish that I could write telling you, I had a fantastic time. I wanted so much to be well enough to enjoy the whole cruising experience as well as visiting new places such as Rome and Florence. However, unfortunately, I found the majority of the holiday feeling very unwell. The dizziness and vertigo were severe for the entire trip and had not settled since returning, so I am hoping it is not yet another deterioration in my condition. A lot of people who I know that have been on cruises assured me that these ships are so large that you cannot feel them moving at all (apart from the times when the sea is rough!), however, my experience was far different. Even when the cruise ship was docked at the ports, I still felt the ship moving; for the entire holiday, my world was awash with constant motion.
Perhaps due to the neurological condition and the problems with balance, as a result, I am hypersensitive to any movement. Furthermore, as a consequence of the increased problems with my balance while onboard, the number of falls that I experienced increased as a result and therefore had to rely on my wheelchair for most of the cruise. However, having said this for me, a cruise was preferable as if my severe symptoms suddenly presented themselves then I would not be too far from the cabin where I would be able to lie down and recuperate until the symptoms dissipated and I felt well enough to rejoin the fun onboard again.
[Tweet “I was awash with constant motion on the cruise as a result of my hypersensitivity to movement.”]
I didn’t manage to get off the ship during the cruise but didn’t miss out on the amazing sights that were on offer from the ship itself. A beautiful shot of Nice
The symptoms, however, did not dissipate or I recovered enough to enjoy the experience fully, and therefore, unfortunately, was unable to leave the ship and visit the various destinations that the ship docked. The symptoms were just too severe for me to feel well and strong enough to get off which is such a disappointment for myself as I so wanted to visit these places and those in Italy in particular. Instead, I had to make the most out of what I could do, which was not much because of the severity of the symptoms and due to the weakness in my legs. Instead, I stayed in the cabin and slept due to the fatigue or spent the time reading. It might sound as if I didn’t accomplish much. However, I did manage to read a rather impressive six books during the 15-night cruise, some of which I have wanted to read for a long time but hadn’t found the time.
[Tweet “I couldn’t do much due to the severity of my symptoms so I had to make the most of what I could do.”]
A positive therefore is that the holiday gave me time to rediscover a love of reading and losing myself in stories that for a short period took my mind off the dizziness, trembling, weakness, fatigue, and pain. And talking about pain, I spent a lot of time using the Solarium and enjoying the facilities including the warm Jacuzzi, sauna and steam room. I found that spending time in the jacuzzi was excellent to relax and unwind from the stresses and worries of my condition as well as helping to ease the pain that I experience in my legs. In addition to using the jacuzzi, my mother also splashed out for us to have a massage at the onboard spa Adventure of the Seas, which again was incredibly enjoyable as well as being extremely relaxing. The masseuse noticed the stiffness in my legs, as well as my cold toes, which is a sign of poor circulation so, was even recommended on some oils which we could use at home to ease the pain and increase the circulation in my legs. It was very pricey but was worth every penny. My highlight of the holiday!
My sanctuary onboard Adventure of the Seas
Even going down for dinner was difficult for me – the lighting, the varying ceiling heights, and the loud noises all seemed to bother me. It made me feel very dizzy and setting off episodes of vertigo, and although I felt silly for wearing it, I needed the security of my hat with me, the majority of the time to block out the stimuli which were making my symptoms worse. I was unable to attend the shows because of the strobe lighting and flashing lights used during the performances, as they too are a trigger for the episodes of vertigo that I regularly experience.
However, I did attend an ice show which used such effects, and was very unwell afterward, with the inability to even get dressed the very next day. People did stare and felt very self-conscious, but I remembered a great quote by Dr. Seuss “Those who mind don’t matter, and those who matter don’t mind.” A lot of people who we met during the cruise were lovely and very understanding such as Gemma and Stan, a granddaughter and granddad who sat at our table at dinner. Both were lovely, and we enjoyed their company during the cruise.
Although even attending dinner was difficult as positive is that during most of the holiday I still managed to go despite the severe symptoms I was experiencing and very much enjoyed dressing up for the formal nights. Back inside the cabin, we were greeted with the fun and cute ‘towel animals’ created by our wonderful room attendant (who nicknamed me Rihanna during the holiday!). They also helped put a much-needed smile on my face!!
To conclude, the cruise was a difficult holiday for me, with the deterioration and severity of my symptoms. A cruise, however, does offer several benefits such as the easy and fast booking and check-in day on departure day, and the short distance to your cabin when chronic illness strike. Although the cruise was difficult and felt very unwell for most of it, I am glad that I went; if I hadn’t, there would always be that ‘What if?’ question in the back of my mind. Also, if my parents were to go on a cruise again, I would not feel as if I were being left out or jealous that they were going away and I wasn’t because I am aware of the effects that the constant motion of the ship has on my particular symptoms. But as unwell as I was during the cruise, there were several highlights of the holiday and positives of my time away. Would I do it again? Probably not; perhaps the only way, would be if the doctors were able to cure the dizziness that I experience. How likely that is I don’t know.
[Tweet “I’m glad that I went as if I hadn’t there would always be asking ‘What if?'”]
Welcome to the Health Activist Writer’s Month Challenge brought together by WEGO Health – a social network for all health activists. Again, I am participating in the annual Writer’s Month Challenge in which I will be writing about my health activism and health condition based upon prompts given.
Today’s prompt reads as follows:
5 Challenges & 5 Small Victories…Make a list of the 5 most difficult parts of your health focus. Make another top 5 list for the little, good things (small victories) that keep you going
Again this is a post that has been part of the Health Activist Month Challenge before; I had thought of skipping this prompt, however, I then realised that life with chronic illness can change overtime and therefore, I have decided to do the and write about the challenges and victories of life with my neurological condition. I will think of the recent challenges and victories that have been in my life, and without looking at the previous post that I had written and can then compare how my condition has changed over time.
Challenges
The first challenge that has been rather large in my life recently is definitely fatigue. The fatigue recently has been constant and unrelenting. Often I have no energy, and when I do find the little energy to do things, then I am so shattered afterwards that I find I may need a nap but often that does not help the tiredness that I feel. After being out with my carer, I often find myself collapsing on my bed, and before I realise I have fallen asleep. It has also left me with a lack of energy to be able to do the simplest chores around the house, for example, my ironing has been piling up recently as I have had no energy to be able to tackle the pile of clothes there waiting for me.
My legs have also been challenging for me as late. If I am not battling against the pain, weakness and trembling in my legs then I am dealing with loss of sensation in them. The last few days the pain and trembling has been particularly bad and therefore makes walking both painful and challenging, but more than that it has also led to several falls resulting in cuts and bruises on my body. I am unable to stand for very long because of the spastic paraparesis, which in itself is a challenge as it prevents me from being able to chores such as ironing or cooking without the aid of aids.
The dizziness is another symptom which I have also found to have worsened recently, which has made it extremely difficult to go out, especially when needing the wheelchair. Because the dizziness has been so severe recently, I have had to rely on hats whilst out on trips with my carer. Wearing a hat allows certain visual disturbances which worsen the constant dizziness I live with, or induces the vertigo to be eliminated from my eye line, therefore decreasing the severity of the dizziness and vertigo. The dizziness has been very severe lately, and because of it I have even had to cut short trips out. More time has been spent lying down in a quiet room as the vertigo has been so intense; and suppose it has been such a challenge to live with, that I am not living life as I should.
I have needed the wheelchair a lot more recently which is also a challenge; because of the severity of the dizziness just being in the wheelchair feels very uncomfortable due to all of the movement and visual stimuli that I am subjected to. It seems that recently I have lost all confidence in using the wheelchair, but on the other hand I really need to use it because of how weak my legs are – am often in a catch-22 situation! It is also a challenge as I am due to go on a cruise in 3 weeks, and will need the wheelchair a lot more, especially when off the ship, visiting the cities which we are stopping at such as Rome and Florence. It will be a big challenge trying to cope with the severe dizziness and being in the wheelchair at the same time.
Feeling reliant on other people most of the time. It can be very demoralising when you are unable to do things that once came so naturally, and needing other people to help you. I wish I could be a lot more independent, and feel so helpless when I cannot even go out somewhere on my own. It’s very frustrating!
Victories
I have mentioned this in a recent post entitled -‘I went and I conquered‘ but a recent victory of mine was definitely going into Next, a local retail store and being able to shop in there! This was a big step for me – because of the dizziness, stores such as Next can aggravate the dizziness and vertigo and makes them a lot worse because of the layout of the store, the height of the ceiling as well as the fluorescent lighting used. My carer and I have been trying for a long time for me to even set foot in there. It such a joy, knowing that I can shop in-store, save myself the cost of postage and packing, and even trying clothes on; something I haven’t been able to do for such a long time. I have since shopped in there several more times since the original blog post and bought several items that I need for the holiday we are soon to embark on.
This actually links in with a challenge listed above regarding the use of a wheelchair. Yesterday the weakness in my legs was significantly bad, and so as my carer and I were headed to a local garden centre, it was decided that I very much needed to use the wheelchair. The dizziness was severe, and so I was nervous about using it. But, I actually was victorious against the dizziness, and managed to stay in the wheelchair and even managed to wheel myself around. I felt in control whilst using the wheelchair for the first time in a while. This is a victory as it has really boosted in my confidence at the thought of needing to use the wheelchair on holiday.
I think another recent victory was keeping up with the Health Activist Writer’s Month Challenge especially considering how severe the fatigue has been recently. It has been difficult to do anything as I have felt so tired but being able to keep up with this writer’s challenge has been a real victory for me as it has been very difficult doing it, but shows that I am able to push through and come out the other side.
One thing that really keeps me going are the networks that I have created thanks to social media. The friends I have made really keep me going through the dark and difficult times and is always a ray of sunshine, receiving a message of support on a day in which you are really struggling. I am really proud to be involved with a new online community for those with neurological conditions, and it is the work behind the scenes which at the moment is really giving me a purpose which is a great and important victory especially as living with such conditions can make you feel so dependant on others.
My positivity board is a real victory and one thing that does keep me going despite living with a chronic illness. A lot of people have contacted me regarding my board, and have even created one for themselves! I love that I have inspired others and help make someone stay positive through their own illness or troubles.
What about your own challenges and victories – have they changed over time as your condition has changed? Would love to hear your thoughts and suggestions. Please feel free to post your comments below…
