Always interesting, often different

Posts tagged ‘chronic pain’

Why words matter – Spoonie or Energy Impaired

Last year I got an invitation to participate in the Chronic Illness Inclusion Project (CIIP). It’s run by an amazing woman called Catherine Hale whom I’ve now got to know well.

The research project is exploring the validity of the concept of Energy Limiting Chronic Illness as an impairment group and as part of the Disabled People’s Movement.

We often use the word spoonie amongst ourselves to describe not having enough energy to do the tasks that everyone else takes for granted. Whilst this concept makes sense to us and it’s easy to explain to others it’s not one that is easily recognised by medical professionals. 

The CIIP has come up with the term energy impairment to describe the difficulty that so many of us face with not having enough spoons/energy to do what we would like to do each day.

Whilst I love using the term spoonie and have badges with a spoon on then I can understand why some people think that we need different terminology. 

Could there be some sort of scale to compare our energy levels to those of someone who is not energy impaired? One of the most difficult things about being energy impaired is how to quantify our inability to do things because we are just too exhausted. 

We’re not “just tired” as people seem to think, it’s more fundamental than that.  It is literally about saying if I have a shower and get dressed today I can’t do anything else until after lunch because I’m just too exhausted to move.

For me it’s much more important that I keep up to date with what’s happening in disability politics and the world in general than I spend two hours having a shower and getting dressed when I’ve got nowhere to go. 

That’s my personal choice and one of the things that gets me so mad with social workers and occupational therapists is that their focus is about pushing me to do tasks which make me too exhausted to enjoy the end result.  

How often have I heard another spoonie say; Now I’ve cooked my meal I’m too exhausted to eat it”. That’s no way to live. 

We need to explain to medical and other professionals that being energy impaired has a huge impact on every part of life. Energy impairment is not just applicable to those who have ME or Chronic Fatigue Syndrome. Energy impairment is a massive part of our lives if we have chronic pain, fibromyalgia or any other long-term condition. 

Using the term energy impairment gives us a different status. It is a direct comparison against non-disabled people who do not have to battle the difficulties we face every day. 

If I was to compare how I am on a good day with what I used to do at work running a large Nursing Home, I probably function at about 20% of my previous life. That’s without factoring in things like travel to work and and doing household tasks.

That’s easier to explain to the doctor or nurse and possibly social workers or OTs, even if the latter two don’t seem to want to accept what many of us tell them. 

We talk about people having a visual or hearing impairment so why not talk about being energy impaired?

I’m going to start using this new term my blog and elsewhere. I hope and believe that it can change the way we are perceived.  

If other disability bloggers and activists use the term energy impairment too, it would be a great way of populating this description across the disability community and eventually into mainstream medical terminology.

Category:

Everyday Life, Medical, Politics

Tagged with:

How (not) to chose a carer – Part 1

Finding the right carer can be like crossing a minefield

I have needed carers to help me for over 10 years now and these are some of the things I’ve learnt.

If you chose to use an Agency you will be able to meet with a number of different companies to see which one is able to best meet your needs.

However, if your care is organised by Social Workers, you or you family will have little choice as to which Agency provides your care needs as this is decided for you by your LA (Local Authority). But most importantly, you do still have a choice over who comes into your home.

If you find a carer disrespectful or rude or they do not understand your needs or provide poor care, you have a right to refuse to have that carer back again.

Because care work is so poorly paid a high percentage of agency carers are from outside the UK. My experience is that many do not either speak or understand sufficient English to be able to meet my needs. And if I’m struggling to work with them, heaven help anyone who is deaf or has impaired vision or speech!

I have spent almost all of my working life employing Nurses and carers from ethnically diverse backgrounds – so I’m well used to making sure care staff can be easily understood by their colleagues and the residents they care for. Also I often had a good number of applicants for each job. However Agencies today are usually so pressured to provide a service that they take on staff whose English is not as good as it should be.

Carers are in our homes for a short fixed time only and they always seem to be rushing to get to their next client. An Agency I used recently sent me a carer who was good – but every time she got delayed at a previous client’s house she missed my visit – leaving me with no breakfast and unable to take the pills I need to have with food. My pain levels increased dramatically, impacting on the rest of my day. After 3 mornings of this – I had no alternative but to ask the agency not to send me that carer again and made the decision to go back to directly employing someone.

The example I’ve just used is fairly extreme, but often it’s been really simple things that carers have struggled with – not burning food – making sure food is cooked properly & served on a hot plate or bowl. Making sure I have the right cutlery. Washing up is a very basic task, but yet I’ve often found that I’ve need to check that dishes and cutlery are washed properly.

I’ve had carers who have refused to do any domestic work, ie cleaning or hoovering, even if that has been part of the work they are contracted to do. I’ve had a carer pull a Dyson so roughly that she has broken the hose – and then denied she had done so – the agency refused to take responsibility for the damage, and whilst I was still arguing with their insurers – the agency lost the contact with the borough I lived in and went bust – so I ended up very out of pocket.

For a time one London Borough where I lived paid a company to undertake shopping at Tesco’s for clients. For the 3 months I used them I don’t think I ever got the right order! One day when my flat front door and step were being painted the delivery guy walked onto the step and left a large black boot print on my carpet and slammed my front door so hard he made a hole in the wall of my hall! As soon as I realised I called the agency & the Council – the agency were less than helpful and I only got a very small settlement.

There are good agency carers, but I no know it can take time for me to find the carer who can best meet my needs. I have used 6 or 7 agencies so far and only one sent me a great carer from the outset, with others I went though at between 5 or 8 people to get someone who was able to care for me properly.

This is the first of two blog posts on this topic.

Part 2 will follow shortly.

Category:

Everyday Life

Tagged with:

Six Common Misconceptions about the Chronically Ill

This article was originally published on ProHealth.com reposted by Arthritis Care UK and is reprinted with kind permission from its author Toni Bernhard.

More often than not, chronic illness and chronic pain go hand-in-hand, so when I use the term “chronically ill,” I’m including people who are in chronic pain. My hope is that it won’t be long until these common misconceptions become uncommon ones, as people become educated about what life is like for those who suffer from chronic illness (130 million in the U.S. alone).

Misconception #1: If people look fine, they must feel fine.

Whether healthy or sick, it’s good for most people’s morale to try and look nice when they go out. I go out so seldom that I make an effort to look my best when I do. Sometimes I feel like a young child again, playing dress-up. That said, I always hope that if I see people I know, they’ll remember that looks can be deceiving.

I’ve had people say to me, “You look great.” I know they’re trying to be nice, so I make an effort to respond graciously (with something other than, “Well I don’t feel great,” spoken in an irritated tone of voice). But the truth is…there I am, “looking great,” while my body is pulsating with flu-like symptoms, my muscles are aching, and my heart is pounding so hard that sometimes it feels as if it must be visible to others on the outside of my body!

When people see someone whom they know is struggling with his or her health, I hope they’ll remember that they have days when they leave the house looking great but feeling terrible, perhaps from a bad night’s sleep or from lingering symptoms of an acute illness. If they understood that this is how most chronically ill people feel all the time, this common misconception would be well on its way to becoming an uncommon one.

Misconception #2: If people’s illness or pain were truly physically based, their mental state wouldn’t affect their symptoms.

If you’re not sick or in pain, I invite you to try this simple two-part exercise, so you can test this misconception out for yourself

Part One. The next time you feel under stress—maybe you’re angry at someone or worried about something—stop; close your eyes; and pay attention to how your body feels. Can you feel that your muscles have tightened? In addition, your heart may be beating faster and your whole body may be pulsating. You may even have broken out in a sweat. These are just some of the ways that mental stress manifests in the body of a healthy person.

Part Two. Keeping that stressful mental state in the forefront of your awareness, now imagine that you suffer from chronic pain and/or illness. What would happen? Your body would respond to the mental stress the same way it did for you as a healthy person. But now, that response would be in addition to your chronic, everyday symptoms. And if those symptoms happen to overlap with the physical symptoms that accompany mental stress—tightened muscles, racing heart, pulsating body and maybe even sweating—you can see how a person’s mental state can easily exacerbate the physical symptoms of chronic illness.

This is why keeping mental stress to a minimum is so important for the chronically ill. It’s important, but often impossible. Why? Because we live in the same stressful world that healthy people live in.

Misconception #3. Preparing for an event by engaging in “radical rest” will assure that when the occasion arrives, the chronically ill will be in better shape than had they not rested.

I can “radically rest” for several days in a row before a commitment (I’ve had some events for my new book that I’ve been doing this for) and yet, on the day of the event, feel terribly sick. Resting may increase the odds that I’ll be less sick than usual on the day of the event, but it’s no guarantee.

When my granddaughter, Cam, turned six in September, I asked my husband take me to her birthday party for a short time since it’s only an hour’s drive away. It would have been a treat to watch her interacting with her friends (something I rarely get to see) and to meet their parents. I rested for four days before the event. But that morning, I called my son in tears to tell him that I was too sick to attend.

This misconception can lead to serious misunderstandings. For example, a week later, I was able to attend an event for my book. This could make it appear that I was choosing the book event over my granddaughter’s birthday party, but I was not (and thankfully my son understood this).

The truth is that the same amount of resting before each of the two events simply did not yield the same results. That’s the unpredictability of living day-to-day with chronic pain and illness. Not only can it be a source of disappointment and sadness, but if we don’t treat ourselves kindly and with compassion, it can lead to self-recrimination and be a source of terrible guilt.

Misconception #4: If chronically ill people are enjoying themselves, they must feel okay.

When an important occasion arises, people who are chronically ill have learned to put up with the symptoms of illness, including terrible pain, so they can try to enjoy what they’re doing, especially the enriching experience of being in the company of others. Please don’t assume that a person who is laughing is a person who is pain-free, ache-free, or otherwise feeling good physically.

Misconception #5: Stress reduction techniques, such as mindfulness meditation, are a cure for chronic pain and illness.

Stress reduction techniques can be effective tools to help with symptom relief and to help cope with the mental stress of ongoing pain and illness. However, unless a person suffers from a distinct disorder called somatization (in which mental or emotional problems manifest as physical symptoms), stress reduction techniques are not a cure.

Misconception #6: Being home all day is a dream lifestyle.

This misconception arises because, when healthy people entertain this thought, they’re not contemplating being home all day feeling sick and in pain! Put another way, would they say: “I wish I could be home all day with pain that no medicine can relieve”; or “I wish I could be home all day with flu-like symptoms that keep me from being able to read a book”? I doubt it.

My heartfelt wish is that people will become educated about what life is like for the chronically ill so that, some day soon, we can say that these are six uncommon misconceptions.

Toni Bernhard is the author of the award-winning How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and their Caregivers. Her new book is titled How to Wake Up: A Buddhist-Inspired Guide to Navigating Joy and Sorrow. Until forced to retire due to illness, Toni was a law professor at the University of California—Davis, serving six years as the dean of students. Her blog, “Turning Straw Into Gold” is hosted on the website of Psychology Today. She can be found online at www.tonibernhard.com.

Category:

Everyday Life, Medical

Tagged with:

Tag Cloud