Invisible Disabilities and Gigs

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So, I went to a gig last week. I’ve been going to gigs regularly for years, but over the past year my hypermobility and dyspraxia are manifesting themselves in a way that is making it really hard and painful for me to stand for long periods now. I always buy a seated ticket when available, but I’m finding it hard to accept not being able to go to gigs which aren’t in seated venues. Why should I miss out?

There are some gigs that I understand, aren’t suitable for me anymore, but the one I was at last week was far from it. The standing section had little cut out sections at the sides for disabled people, with seats and a little area of flat ground standing area (the venue had a sloped floor, which was really hard to stand on). I had spoken about not being able to stand very well (I also have a broken toe at the moment!) with the venue beforehand, but they said seating was not available. When I’d booked the gig, I hadn’t broken my toe, so I thought I’d just about manage standing. (I would probably have been wrong anyway!)

When I noticed the little area, I waited until the main band came on stage, to see if anyone else needed to use that area, and only two other people had gone in. So, I stood on the flat bit of floor at the very back of the area, in case others needed to use the chairs, or wheelchair users needed floor space. I felt happy, because I could cope better with standing on the flat floor.

About 3 songs into the main band, a lady in a wheelchair came into the area, so of course I moved further back to make sure she had enough room, then the security guard came in and told me to get out and that I wasn’t allowed to be there, it wasn’t for me. Then a large group of people dancing pushed past me to get in the space. I can’t comment about whether they were disabled, because this is the point of this blog. I don’t blame the security man, but this is an issue which is very prevalent in society. I felt really embarrassed and like I had to qualify my disabilities to him. Sometimes I feel ashamed, as if they think I’m lying, because I look fine.

We are so quick to judge people’s health or ability without knowing anything about them. I look like a ‘fit healthy young woman’, but I’m not. Some days, I can’t walk very well at all, and have to tape up my joints which are in shooting pain. Other days, I’m at the gym on the cross trainer (not being the most graceful though, I must add!). It’s confusing for me, so I know it must be confusing for others.

A lot of health and disabilities fluctuate massively, so why can’t we get this is our heads? And it’s not just able bodied people who do this, people with health conditions do it to.

My friend has hEDS, Fibromyalgia and POTS and uses a wheelchair or a walking stick. She was sitting behind a counter at work and a man who was a wheelchair user buying a ticket from her said ‘you don’t know what it’s like to be disabled!’ I’m sure, he must’ve been having a particularly bad day and was feeling frustrated…but he shouldn’t have made that assumption.

I think the main thing to take a away from both mine and my friend’s experience is, to never make assumptions about anyone’s situation. I’m still training myself to do this, in other areas of life.

As for gigs, I really hope there are more areas like this in gig venues, because I thought it was a great idea, but there needs to be more communication between the venue and people who need to use those areas. It would’ve been better, if I could’ve privately explained my situation to someone and they gave me a wrist band for the area, avoiding embracing questioning.  I’m sure people with visible disabilities also get these sort of issues arise at gigs also. I sometimes look at venues and think ‘this is definitely not accessible’ and there’s really no need. I’m not expecting to be right up the front and stage diving, but I think everyone has a right to watch a show they want to see.

What happens when you assume…

 

 

 

 

 

Why I Love Hydrotherapy

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When I was a teenager I was a competitive swimmer. Being in water felt a lot more natural to me than being on land!

When I was 15 I subluxed (partially dislocated) my kneecap in the pool. It was then that I was diagnosed with being hypermobile. It was a relatively minor subluxation and since then I’ve only ever subluxed that knee again, once last year.

Despite my joints being very stable and pain free for a hypermobile person, this last injury left me really nervous of my own body. I was frighten to move properly… let alone exercise, in case another joint might do the same thing.

My osteopath suggested that I try hydrotherapy as a way of easing back into exercise and for strengthening my body. At the time I also had an NHS physiotherapist, who I told about this idea. She scoffed and said that ‘hydrotherapy  is for decrepit people’. For a start that is a really derogatory word to use…especially coming from someone in her position. It’s shocking. But even if that word was ok to use, she is just plain wrong about hydrotherapy. There are lots of different types of exercises that people can do in the pool, which can be tailored to their abilities and needs.

So, generally hydrotherapy is the use of water in the treatment of different conditions, including arthritis and related rheumatic complaints. Hydrotherapy differs from swimming because it involves special exercises that you do in a warm-water pool. The water temperature is usually 33–36ºC, which is warmer than a typical swimming pool. I actually did mine is a normal temperature pool, as I was ok to take a colder temperature.

You’ll normally have hydrotherapy treatment within a hospital’s physiotherapy department. Usually a physiotherapist or a physiotherapist’s assistant with specialist training will show you how to do the exercises. The focus of the exercises can be adjusted to help your range of movement or strength, depending on your symptoms.

Hydrotherapy tends to be different to aquarobics, which can be quite strenuous, as it’s generally more focused on slow, controlled movements and relaxation.

I’ve decided to compile a list of some of my favourite exercises which I still use to keep fit, a long side swimming, weights and walking.

1. Water walking or jogging: Start with forward and backward walking in chest or waist high water. Walk about 10-20 steps forward, and then walk backward. Increase speed to make it more difficult. Also, increase intensity by jogging gently in place. Alternate jogging for 30 seconds with walking in place for 30 seconds. Continue for 5 minutes. Place you hands on your hips as you do this, to really help practice your balance. It’s hard that it look, and you’ll feel it working your core!

2. Forward and side lunges:  Standing near a pool wall for support, if necessary, take an oversized lunge step in a forward direction. Do not let the forward knee advance past the toes. Return to the starting position and repeat with the other leg. For a side lunge, face the pool wall and take an oversized step to the side. Keep toes facing forward. Repeat on the other side. Try 3 sets of 10 lunge steps. For variation, lunge walk in a forward or sideways direction instead of staying in place. I’m useless at lunges on land, so this is great, because it takes the pressure on the knees.

3. One leg balance: Stand on 1 leg while raising the other knee to hip level. Place a pool noodle under the raised leg, so the noodle forms a “U” with your foot in the center of the U. Hold as long as you can up to 30 seconds and switch legs. Try 1-2 sets of 5 on each leg.

4. Sidestepping Face the pool wall. Take sideways steps with your body and toes facing the wall. Take 10-20 steps in 1 direction and then return. Repeat twice in each direction.

5. Push ups: While standing in the pool by the pool side, place arms shoulder width apart on pool edge. Press weight through your hands and raise your body up and half way out of the water, keeping elbows slightly bent. Hold 3 seconds and slowly lower back into pool. (Easier variation: Wall push up on side of pool: place hands on edge of pool shoulder width apart, bend elbows, and lean chest toward the pool wall.)

6. Standing knee lift: Stand against the pool wall with both feet on the floor. Lift 1 knee up like you are marching in place. While the knee is lifted even with your hip, straighten your knee. Continue to bend and straighten your knee 10 times, and then repeat on the other leg. Complete 3 sets of 10 on each leg. For more of a challenge, try this exercise without standing against the pool wall.

7. Corner Pool Kick ups: Rest against the corner of the pool leaning back on your arms, which are resting on the edges of the corner. Kick your legs up one at a time, reaching as high as possible. I really feel this one working my my uppers legs!

I am fairly fit now, and swim regularly but I still start with these exercises. I feel the difference in my balance and strength from doing them, and they gave me the confidence to start swimming again and try the exercises out on land. It is also a lovely and relaxing way to wind down and clear your mind. I also find, if the water is warm, it can help with loosening muscles and easing aches.

If you are physically able to do some form of water exercise, it really is very beneficially. You can work the muscles, without putting the impact on the joint that you would in the gym.

It’s just a shame that for people with severe mobility issues, the specialist equipment and sessions are not readily available on the NHS. The sessions I attended for my level were £50 for 40 mins, which REALLY adds up. Hopefully as chronic conditions are better understood, alternative pain treatments such as hydrotherapy will be more available.

My Hypermobility Toolkit

I’ve known I have Hypermobility Syndrome*(edit about reclassification below) since I was 16, so I’m fairly lucky. Many people suffering with this condition don’t get diagnosed until much later in life and damage (both physical and mental) is already done. It can cause chronic pain and fatigue, amongst a lot of other things.

For me, I’m on the milder end of the spectrum and so I have learnt how to manage my condition quite well. You have to be very disciplined with your exercise routine and pacing your day is key (I’m still trying to get the hang of this!)

I have a few go to tools which really help me with exercises and pain relief.

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Foam Roller

I don’t know what I did before I discovered foam rolling. I think everyone should be using a foam roller (*if it is physically possible for them to). A roller can be a valuable part of exercise warmup and cool down routines.

Rolling improves circulation, which gets the body ready for a workout and helps it recover afterward. Also, because rolling breaks down knots that limit range of motion, it preps muscles for stretching.

I find it an invaluable tool to get rid of tightness in the muscles in my legs especially.

Massage Balls

These are popular in yoga and I can see why. I find the spiky yoga balls really helpful to target niggling knots around my shoulder blades. If you don’t have one, tennis balls are also great. All you have to do is lean back on them against a wall and move around until you find the point which is bothering you. Since discovering self trigger point massage, I’ve suffered a lot less with back pain.

I recently bought the stick with the balls on it, which is amazing if you’ve got knots in both should blades! I bought the one above from Tiger.

Resistance Bands

I get pain around my shoulder blades because I’ve let myself become deconditioned recently. As my ligaments are lax in my shoulders and back, I have to make sure my muscles are as strong as the can be. To get my strength back I do a lot of exercise using resistance bands. The key to using these is to do lots of reps regularly, rather than doing something that uses a lot of heavy weight.

Light Hand Weights

As well as using the resistance bands, I also like to use light hand weights to tone my arms.  Using light weights and doing lots of reps can elongate the arm and get rid of bingo wings (I’m still waiting for mine to go!).

Kinesio Tape

If you suffer with any sort of instability or pain I highly recommend kinesio tape. Kinesio Tape alleviates discomfort and facilitates lymphatic drainage by microscopically lifting the skin. This lifting affect forms convolutions in the skin thus increasing interstitial space and allowing for a decrease in inflammation, reducing pressure while enabling a more effective flow of blood and lymphatic fluid in and out of the target area. It also adds a bit of stability to your joint, which is great if you subluxate them or just feel a bit wobbly!

Swiss Ball

One thing about hypermobility is that it can affect your proprioception. Proprioception is the concept of knowing where your body is in space (body awareness) and the ability to safely maneuver around your environment. It also includes the use of heavy work activities and the ability to stimulate the joint receptors. Therefore, practicing your balance can help with this. Just sitting on a swiss ball and lifting your legs one at a time can really help with this. I also like to do planks on the swiss ball and use it to aid squats against the wall. Doing this means you’re engaging your core, and you won’t be pushing the weight too far forward on your knees.

Heated Bean Bags

As much as you strengthen your muscles and massage out knots, sadly most people with hypermobility are chronic pain sufferers. I am very keen to not go down the medication route (although for some people, it is unavoidable). I find putting heat on my back helps ease it a bit.

Meditation

Meditation can help with distracting yourself from mild pain. I enjoy meditating to help with sleeping if I’m in pain at night and struggling to drift off or if I’m at the osteopath. One thing I would say is, I’ve heard from friends with chronic pain issues and their doctors have told them they’re ‘not trying hard enough to meditate’, if they are still feeling pain. This is nonsense. Realistically, sometimes pain is just too bad to meditate away.

These things really help me, but it must be noted that for some people with Hypermobility Syndrome or Ehlers Danlos Type 3* it is not possible for them to use some of these techniques, as they are in severe pain and suffer very frequent dislocations. I am extremely grateful that I am able to manage my condition as well as I do, and hope one day that there will be more therapies and medicines to help those who suffer so badly with this syndrome.

 

Edit*As of March 2017, Hypermobilty Syndrome has now been replaced by ‘Hypermobility Spectrum Disorders’. Ehlers Danlos Type 3 is a different condition separate from HSD and is know as hEDS. There are also now more types of Ehlers Danlos Syndrome. Read here for more information.

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