Tag Archives: physical health

Hidden disability, stick person standing

Am I disabled?

I recently watched a video where 2 people discussed various scenarios in which they would (or woulnd’t) be considered disabled and it got me thinking about my situation.

I have severe arthritis in various parts of my body. A couple of years ago I had an operation that was meant to prolong the use of my left ankle. Unfortunately, it’s so damaged that, even though they did extensive work (microfracturing to try and regenerate the cartilage), it wasn’t enough and the only option I have left is to have it fused (they’d literally fuse the bones to prevent the joint moving). We’re putting off that operation as long as possible by using an external brace (orthotic) that does the same job, the joint is completely immobilised but I can take the brace off if I want to, for example, wear high heels!

The pain in my neck and back is kept to a bearable level by painkillers and physio but this doesn’t mean it doesn’t impact me on a daily basis. Of course, it hurts physically but chronic pain is mentally draining too. I also have chronic fatigue that means I have to consider the level of activity I can manage but this is still a work in progress and I frequently overdo things. See this blog for how much time and effort go into managing chronic illness.

But – do I considered myself disabled?!

On the surface, no I don’t. I just get on with my life. I have a fairly standard life, nothing particular spectacular but I’m content and I do most of the things I want to do.

The social model of disability looks at whether there are things in society, either physically, or the way the world works, that dis-able someone from functioning fully. But how far should we expect society to bend in order to accommodate one person’s needs?

Simple images of disability examples, person in a wheelchair, brain, sign language, person with cane.

For some people it’s obvious; if you’re in a wheelchair and the only way into a building is via stairs, the environment is disabling your entry into the venue, a ramp or lift is needed. But what alterations would someone with a learning disability need, or autism? How about changing the configuration of the office to accommodate someone with anxiety disorder? What flexibility would you offer someone managing epilepsy? What if someone needs different alterations on different days depending on how their condition is impacting them? Society tend to be confused by hidden or changeable conditions such as mine.

If I had my way, I would have about 36 hours each day, I would sleep for an extra 4 hours, I would use 4 hours to do the things I want to do (hobbies, socialising etc) and the other 4 hours would be spent resting. But this is not something society can offer me!

I work part time, part of the reason for this is because I’m studying to be a counselor but this is an evening course so in theory I would continue working full time and fit course work in around my paid work. However, levels of fatigue dictate this isn’t possible, working part time means I can share my energy between my commitments. With part time work comes a lower salary, I would prefer to work full time, I have the intellectual capability to work full time in a much higher paid job but my health doesn’t allow this – what “reasonable adjustment” that would solve this one?

Sometimes disabilities are invisible. A line of people with labels “ADHD”, “Fibromyalgia”, “Dyslexia”, “Crohn’s disease”, “Arthritis”

My ankle orthotic means that slopes and some steps are awkward – my foot and knee have to work harder but I can’t expect the world to be designed to suit my needs, can I? I find it much harder to stand on public transport because my ability to balance is impaired but no one can tell I need a seat so don’t get me started…! Very few weeks post recent ankle op I was non-weight bearing, balancing on crutches on the underground, did anyone offer me a seat?? I’ll just leave it there!

My orthotic is very well designed to fit inside standard shoes but I’m restricted with the type of shoe I can wear, I could probably do with a left shoe half a size bigger than the right but I don’t want to buy 2 pairs of shoes!

Evenings are a tricky time for me. Pain and fatigue are at their worst and getting to bed on time is important. But I don’t want to miss out on social activities or hobbies. I find it very difficult to send my apologies when I’m “tired”, I don’t want to be seen as unreliable or considered a flake, that’s not in my nature. I’m more likely to push myself beyond my limits because I’m intolerant of my restrictions. But I can’t expect evening activities to be brought forward so that I’m not constantly pushing my body further than it’s really capable, can I?

If I was being obnoxious, I could say that society is disabling me by not providing me with specific adjustments for my needs but I don’t know what entitles me to adaptations?

Another method for measuring disability is whether you could just “up and off” if the worst happened. Could I cope with just the clothes on my back in an unfamiliar environment?

Multiple medications coming out of a pot

Most people with chronic illness are reliant on regular medication, I am no exception – I take a multitude of medication everyday and (when errors have occurred with supply) me off meds is not pretty! Without my thyroid hormone, after a few days I start to slow down, the list of problems is extensive: blood pressure irregularities, low body temperature and memory problems being just the start! Without daily migraine preventative, other painkillers and psychiatric medication, functioning is very difficult, if not impossible!

I manage my mental health to such an extent that I would now say I’m recovered. However, maintaining my health requires certain familiar routines, I don’t know how I’d cope in an unfamiliar environment. Knowing me, I think I’d cope fine for a few days, I’d turn my attention to supporting other people but after about 2 weeks my cracks would start to show, as my energy ran out, my coping mechanisms would break down.

I don’t think I identify as disabled but it’s interesting to think how my life is different because of my chronic conditions. Other people find life a lot easier than I do, perhaps I could ask them to make alterations so we’re on more of a level playing field but I’m not bold enough to be that person who stands up and demands the world adjust for me. It’s different in America, an environment without alterations is unusual but in the the UK we still expect the individual to stand up for themselves. I find it easier to struggle on rather than face judgments from people who don’t want to help me out.

Why do we need rewards to look after ourselves?!

After my recent ankle arthroplasty I struggled with the expected pain, a lot of it but it was bearable. I was working hard at my physio and doing more, she told me I would obviously experience more pain but it really wasn’t feeling right, she told me to persevere but I don’t think she really understood how much pain I was in. I may have a low pain threshold but I have a very high pain tolerance. I experience a lot of pain, I just get on with my life but that doesn’t mean it’s ok or that I’m ok with it! It’s hard to know where to draw the line, how do you know, when you’re rehabilitating, how much pain is too much pain? I was pretty much told, I should keep exercising but absolute agony was the line at which I should stop!
Speaking to a colleague about his painful knee has had me thinking. He was injured 4 months ago and because he didn’t make a fuss when he first went to A&E he’e been through months of pointless pain, finally culminating in an MRI that concluded he needed surgery. He’s been thinking he should have made more of a fuss, if only he’d limped into A&E stating he was in agony, he would have had an MRI within days and surgery so much sooner. Those of us that don’t complain so often don’t get what we need.
I’ve been wondering if I was experiencing more pain than I should have been but my physio said it was fine, to be expected.
I was beginning to think I would be in pain for the rest of my life and I was beginning to get to used to the idea that I may never run again. Disappointed, doesn’t even begin to come close.
I saw my surgeon last week and he had a different opinion, I should NOT be in so much pain. Steroid and local anaesthetic injection on board and…I’m pain free, I can’t quite believe it!
When my physio said “repeat this exercise 20 times”, I do it 60 times and she says “good”, to be honest, I don’t think she was used to patients actually following through with their exercises but I’m so desperate to get better I thought the more I did the better…I can’t help wondering I shouldn’t have been doing so much exercise, I guess there’ll be no way of knowing.
Anyway! Today, on a totally pain-free ankle, I (with more measured advice from another physio) tried running for the first time in 5 months, it was for 1 minute at a time and I’m so excited that I didn’t feel any pain. This is the first time for many years I’ve run with no pain!! So excited, it’s unreal!
I have promised my husband I won’t push it. I will stick to 1 minute at a time for 2 weeks and increase it so slowly I’ll feel like I’m running backwards! But the hope is, I will be back running properly within a year!
My husband knows I’m likely to want to push myself. For starters, I got on the treadmill earlier and said to myself I’d to 2 x 1 minute stints, I ended up doing 5… it’s not don’t any damage and I’m still pain-free but I really cannot push it! I cannot risk needing more surgery.
We started talking about whether I need an incentive…for every week I’m “good” and stick to the slow build up plan, is there anything that would help me stay focused? We discussed all sorts of things but it occurred to me, what more incentive do I need than to look after my health?
Why do we always need incentives? When people are giving up smoking, it’s suggested they put the money they would have spent on cigarettes in a jar so that they can spend it on a big holiday or some new clothes, there has to be something to aim for. It’s the same with people trying to lose weight, for every pound, there has to be some material reward. Reducing the chances of long term life limiting illnesses just isn’t enough!
Our health gains are intangible and it’s like they’re just not enough.
I’m so proud of my 60-something mum who has just completed a couch-to-5k program and has done a couple of Parkruns, being one of the fastest women in her age category! That’s what I want to be doing in 30 years time, but I won’t be if I don’t look after my bones and my joints now, what more incentive do I need?!
Seriously, if I want the best chance of avoiding further surgery and to be running in my 60s, I need to take it slow and steady so that’s what I’m going to do, no other incentive necessary!

Is it ok if I feel sorry for myself?

I’m currently laid up recovering from an operation on my ankle.
I’m usually a fairly active person and fiercely independent so being told to keep my foot elevated and be non-weight bearing for 6 weeks is an incredibly challenging prospect.
I’m also contending with thoughts about why my ankle’s in a bad state. 11 years ago, I broke both legs in a suicide attempt. My ankle needed this surgery due to significant cartilage damage, initiated by the original fracture. Initially we hoped the joint could just have a clean out but the surgeon found the cartilage was too badly damaged and extra work was needed. I also don’t know how much damage I’ve done having had anorexia, my body has suffered many years of malnourishment.

I’m finishing it incredibly hard how little I can do for myself. Being fit and relatively healthy does help, I can do a lot standing in one leg but as soon as I need to carry anything anywhere, a drink, food, literally anything, I’m stuck! I’m also (obviously) unable to drive so I’m having to rely on my husband for an awful lot. I’m having to ask for a lot of favours from family and friends, and I’m incredibly grateful to the unquestioning help I’ve received. But I find this really hard, partly because I’m so used to being independent, partly because I feel like no one will want to help, they just feel obliged. I fear spoiling relationships I’ve worked hard to build on a equal level, now I’m asking for help, I wonder if it will ruin the balance and I’ll be seen as ‘the needy one’, a label I’ve fought hard to shake off.
Being off work is hard, I’m missing the change of pace and environment that it offers, I feel useful and needed at work. I’ve been forced into the sick role. I am, of course, keeping up my side of the sick role bargin and I’m making every effort to get better.
I’m putting on a brave face most of the time but the truth is that I’m feeling pretty dejected. I’m not only laid up physically but my independent character is taking a hit.

I’ve written previously about how it’s important to be honest about our feelings as hiding them, putting a lid on them or pretending they’re not there will just make them worse and we end up expressing them in other (normally unhealthy) ways. For example, if I don’t say “I’m feeling pretty rubbish today” to my husband, I more likely to be short tempered and irritable with him which is very unhelpful when I need to ask for so much support.
If I notice I’m feeling sorry for myself, it’s important not to tell myself that’s bad, then I’ll get into a destructive cycle of beating myself up, not helpful for anyone!
If you listen to your honest emotions, they can tell you a lot about what’s going on. For me, right now, my (feeling sorry for myself) emotions are telling me that things are not ok, and there are things I can do to work towards things being ok. Basically:

  1. I need to do things that will ensure I recover as quickly as possible
  2. I need to look after myself and not do things that will jeopardise my recovery
  3. Do as much for myself as I can – I carry things in a backpack so my hands are free to use my crutches
  4. I need to ask for help and support when needed

If I ignored my feelings I could con myself that everything is fine and this may prevent me doing the 4 things I need to do in order to move forward, out of the sick role.

Being honest and keeping the situation in perspective helps me to keep sight of the facts of my situation, things aren’t good right now but this is a temporary position, things will get better. Pretending things are fine can get quite confusing – if things are fine, why aren’t leading a normal life, going to work, cooking dinner, why would I need to ask for help?!
I fear enjoying being looked after as it reminds me of times gone by when mental illness prevented me looking after myself properly. There have been times when I’ve had a total lack of confidence that I was able to look after myself and this perpetuated my illness. I’ve fought hard to break free from this vicious destructive cycle and I’m desperate not to go down that path again.
The thesaurus states that a synonym for “to feel for” is also “to feel compassion”. Whenever something bad happens (to ourselves or another person), it is important to feel compassion, this has a positive effect on the healing process.

It is not, however, ok for me to wallow in self pity! This is not productive, in fact, it can be incredible destructive. Self pity has no purpose, other than to turn our focus inwards. It has a negative impact on recovery as it can actually stop us reacting positively to the situation.
In conclusion, it is ok to feel sorry for ourselves but in listening to this we need to react positively.