How friends & family can help people with chronic illnesses

Tomorrow kicks off CFS/ME awareness week and I will be posting each day mainly creative things that us suffers have created to raise awareness.

But to kick off the week I thought that this would be a great way to get the ball rolling, in one of my online groups we created a document to give to friends, family or anyone else who it might be useful to; of things we thought that those around people with chronic illnesses could do to help make our lives easier.

It is hard for us suffers but it is really hard for those around us too, often those around us feel helpless and don’t know how they can help, this is a list (obviously not exhaustive) but to get people thinking of the little things they can do to help.

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Dealing with the unexpected when managing CFS/ME

In my previous post :What activity management means to me in dealing with my CFS/ME I talked about the methods that I use for activity management to ensure I pace myself. Carefully planning out my activity for the week.

But things don’t always go to plan, inevitably things pop up that you didn’t plan for so do you deal with these and try to avoid the push crash cycle?
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What activity management means to me in dealing with my CFS/ME

I have had CFS/ME for around 18 months give or take, and I can no means say that I am recovered (still on that journey!) but what I can say is that my symptoms and my functionality has increased ten fold.

I have gone from being house bound and being off work at my worst, only being able to be out of bed for short periods of time and with the help of my partner…. to the current day where I am able to work 3 days a week have something that resembles a social life.

So what has helped this change?

No I haven’t taken a magic pill (I wish!) although I do take a variety of supplements .

The key is managing this condition in the best way you can.

Activity management has been so key to my recovery and that of many of my spoonie friends.

However there is no one size fits all with these conditions at all; everyone has different things going on in their lives, children no children, work no work, and the list goes on!

So how do you work out your ever so illusive BASELINE, one thing that helped at the every beginning was to categories everything I did as either: High, Medium, Low, Rest or Sleep (Something I was taught at the the North Bristol CFS Clinic – Link) Continue reading

Types of Pain (NHS TiP Course Part5)

Pain is an all to familiar symptom for those suffering from CFS/ME.

During the course we learnt about different types of pain, which I found pretty useful as it helped me understand why a lot of pain killers don’t work for me (or the majority of ME sufferers).

Types of pain

Acute pain

I always thought that this implied severe pain, but from a medical point of view this simply refers to new pain, who knew? I certainly didn’t.

You fall down the stairs and sprain say your knee.

This pain is classified as acute, the pain meant to be a warning sign that there is a problem and potentially damage. It is there to
get us to pay attention- maybe for us to seek help or rest- warning us to slow down to heal up.

Acute pain only tends to last for maximum of 3-6 months basically how long it takes for the tissue or bone to heal.

If the pain is there after this period after it has had time to heal, it is no this regular damage.

So after 6 months after the fall, you knee has heeled but you are still in pain.

This pain is no longer useful – it doesn’t relate to a particular broken bone or damaged tissue, it has now become Chronic Pain.

Chronic Pain

Chronic pain can easily consume your life, and I am guilt of it doing that at times. Especially if you keep trying to figure out why you are in pain.

Seeking help can be helpful, talking to your doctor is useful to discuss different opinions and to rule out any acute issues.

As chronic pain doesn’t relate to a specific injury per say the usual pain killers that have helped previously that target specific swelling or injury will be a lot less effective.

So what is this chronic pain?

An analogy they used which really made sense to me:

In an organisation as a lot of different incoming information, using lots of different people to process this information.

Support staff filter the information and pass only the relevant and important pieces to the CEO/Boss. As the CEO can only process so much information.

If the support staff all called in sick, the CEO would have to process all the information, they would get overloaded and would struggle to sort between relevant and irrelevant in an efficient and timely manner.

Well you are the organisation, when you are suffering from chronic pain your brain is not filtering out the irrelevant information for you and so you feel pain.

But what does this mean?

Well I found the analogy above really helpful, it doesn’t mean that my pain (or anyone one with chronic pain) pain isn’t real!

Pain is a really difficult thing to live with and it can wear you down, make you not sleep or be able to get out of bed in the morning, make you feel like you are walking on glass with every step you take.  So why have I found this distinction useful?

  1. When doing stretches etc I know I am not causing any damage.
  2. Different pain killers will more or less effective, as you need to go from targeting specific injury to ones that block the messages in your brain.
  3. Enabled me to come to terms with the pain, and in some ways that as made it easier to live with, use guided meditation and breathing exercises to help.

If you liked this post you might want to check out some of my previous posts:

Or for a full list of my CFS/ME related posts check out my CFS/Me Index

Stretching for ME/CFS/FM (NHS TiP Course Part 4)

Movement is so crucial to a person, regardless of what illness they may have or not. This is no different from people suffering from CFS/ME/FM, I talk about the benefits in further detail in my previous post: Benefits of Movement (Link).

However exercise or movement as I think is better called, has such negative press in the CFS/ME Communities, and to be honest quite rightfully so in a lot of instances, for example when people are put on non personalised formal GET programs, where the ‘professional’ put more emphasis on sticking to the program than listen to the bodies of their clients/ patients, but instead we should try to add movement into our lives that listens to our own body, a good way is to do stretches. Continue reading

A Reflection of my chronically ill 2014

Another year has gone by, and now is the perfect opportunity to reflect and build a plan for next year.

I think whether you are suffering from a chronic illness like myself or as fit as a fiddle it is really good to look back and reflect and have some achievable goals for 2015 (Link- Coming Soon).

So I have decided to compile a list of questions to help me review my previous year, if you fancy going through and doing this exercise I would love to hear your responses in comments or feel free to just put pen to paper 🙂

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2015 the time to accept the things you cannot change and the courage to change the things you can.

New years is a great time to sit and reflect both on the year gone by, what you have and haven’t achieved, where you are as a person right now but also helps you to focus various aspects of your life that are in your control.
One of my favourite quotes of all time is:

Give me the Strength to; Accept the things you cannot change, give me the courage to change the things I can & the wisdom to know the difference.

Diana Porter Sibyls

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