Separating me from M.E. (and other chronic illnesses)

Imagine waking every day and being unsure about what you’ll be able to achieve that day. You may wake up to pain levels so high that even rolling over in bed is too painful, or maybe your energy is so low that you can’t even get your eyes to open properly…

Maybe, like me, you don’t need to imagine this at all. Maybe you live with a chronic illness that makes your life unpredictable and very VERY frustrating.

When you have a chronic illness it can be quite easy to be hard on yourself for all the things you struggle to do, or simply can not do, on a daily basis. These things can be as simple as taking a shower or brushing your teeth. Things that others may take for granted.

One tool that I’ve learnt to have in place to help me and my extended family and friends cope better with my multiple chronic illnesses is to find a way to separate myself from the illness. When I’m unable to do something, I (usually) remember that I shouldn’t be angry or frustrated at myself. It’s the illness and it’s symptoms that I should be angry and frustrated at.

A great way I’ve found to separate me from my conditions, is to personify my illnesses (or at least the main symptoms I face). The characters I’ve created are Foggy Frog and the Pain Gang. By personifying my symptoms in this way I can say things like “it’s Foggy Frog that is making it difficult to make a coherent sentence today” or “Stabbing Spider that has taken my breath away.”

Having this separation between myself and my illness helps me keep a positive and open attitude towards my life. It gives me room to focus on the things I can do or the things around me that I can be grateful for.  I can focus on all the things I am; I aim to live as simply, sustainably and meaningfully as possible. I am passionate about working with others. I am a loving wife and caring friend. I am an advocate and an educator. I am not just my illness!

The separation also helps with my relationship with my husband. When he’s frustrated at what I can’t do, we can both be angry and frustrated at the illness and I don’t feel the need to take things too personally. We are able to talk openly about how we feel and, as long as we can maintain the separation between me and my symptoms, the anger should be aimed at the illness and not me.

The idea of separating yourself from your illness is generally discussed from the point of view of mental illness such as OCD, Schizophrenia, Bipolar or Depression, but I’ve found it useful living with physical conditions such as Myalgic Encephalomyelitis and Fibromyalgia and I’m sure it can be applied to many other conditions.

Chronic illness makes life difficult at the best of times. Having to deal with both constant and unpredictable symptoms can take a major toll on your self esteem and general mental health. However, by separating ourselves from our illnesses we can nurture a healthier relationship with our bodies, our lives, and our families that will allow us to remember who we actually are. We are not our illnesses.

What techniques do you have in place to separate yourself from your illness or to otherwise maintain your mental health?

Life with chronic illness: Dealing with Emotions

Imagine waking up one day and finding that your whole life has changed. Just like that you couldn’t be who you thought you were.

One day you are happily working full time in a job that makes you feel like you’re making a difference. You’re keeping healthy by visiting the gym most days of the week, walking whenever and where ever you can, and working on your diet (eliminating foods that you react to). It’s important to you that you’re keeping your brain active so, on top of all those other things, you’re studying to improve your skills in a field you want to expand into.

The next day you’re curled up in a ball on the couch, struggling to stay awake and living with pain 24/7. You can no longer do any of the things you could do the day before. Dreams you thought were certain to come true in your future are now uncertain, possibly even gone.

Over time, and with the help of a large team of medical professionals and other support people, you’re able to slowly build up your ability to do some of the physical and mental activities you were able to do before but you’re still not 100%.

This whole process is bound to stir up emotions. Lots of them! Both in yourself and in those who love you and care for you. How do you deal with these emotions?

Life with chronic illness is an emotional rollercoaster and you tend to cycle through the various stages of grief and acceptance throughout your life including denial, anger, fear, and acceptance.

There are several different models outlining the stages of grief and how to deal with them. To find out more about the stages of grief and acceptance specifically related to living with chronic illness, check out this free e-book from Katherine T Owen from Healing CFS/ME and this post from Rev Liz.

Today I don’t want to focus on what the stages are but on how to deal with our emotions in general.

Lately, I’ve been struggling with feelings of anxiety, fear and depression as I try and reconcile my preconceived notions and dreams (those I had before I got sick) with my reality. I had at least a week of feeling overly emotional and struggling with bursting into tears for no apparent reason at times.

Now that I’m starting to feel better, I’d like to share some tips about how to cope with these emotions. These tips are suitable for dealing with any extreme emotions (not just negative ones). This is important because if you are living with ME/CFS or Fibromyalgia any stresses and extreme emotions can impact on your health.

1. Control what you can, accept what you can’t. This is a statement that’s easy to say but hard to implement. It seems pretty clear that you can’t control everything in life. When you live with a chronic illness this is doubly true. You loose control of any predictability in your day to day life in terms of pain and fatigue levels and what you’ll reliably be able to do. You find yourself unable to commit to activities or events, and when you do you may find yourself cancelling them often. What you can control is how you deal with these issues. Accepting that your life needs to be flexible helps you to reduce your stress levels. Determining your baseline and attempting to develop a routine that keeps you close to that baseline most days enables you to slowly build up what you can do.
2. Be Mindful. This links in closely with the tip above. By living a mindful life and trying to stay in the moment, you can focus on the things you can do and be grateful for what you have in life rather than focusing on those things you can’t control.
3. Have someone to talk to. This would preferably be someone outside of your immediate family. Why? The people around you are going through their own struggles learning to accept and adjust to the major changes to their lives that your illness has been responsible for. Having someone outside that you can talk or vent to is important for maintaining mental health. It’s important not to bottle everything up inside until it explodes.
4. Be as active as possible. I’m not saying go running, or even go for a walk around the block. What I am saying is do what you can to keep your body as healthy as possible. This may be as little as a few stretches in bed. I find when I’m able to be more active I’m able to clear my mind more and deal with the emotions that are there.
5. Sit with your emotions. As I’ve already mentioned, it’s important not to bottle up your emotions. I’ve found if I allow myself to cry if I need to and just sit focusing on my breathing and not trying to suppress my feelings it can help me work through them. You could also try journalling to get everything out.

These tips are specifically focused on dealing with the emotions that arise because of chronic illness in your life. They are not the be all and end all, and I’m sure you can add some more of your own, but they are a starting point. We have previously done a post on being mentally strong which also holds some helpful tips.

Do you have any tips of your own that you’d like to share?

How do you cope when your emotions are running high?

Just One of Many: Difficult decisions with Invisible Illness

This year’s theme for Invisible Illness Awareness Week is “Just One”.

My whole life I have suffered from invisible illnesses. From a very early age I suffered from asthma and allergies. Because I grew up with them I know how to manage them reasonably well (although I’m still identifying and learning to manage new allergies all the time). The newer conditions (Fibromyalgia, ME/CFS and Pelvic Congestion Syndrome) I’m still learning how to manage and live with.

I feel like since I have been living with these conditions my whole life has been turned upside down. Many things have been put on hold or given up. I haven’t worked in over a year, I struggle with social events and I only just manage to stay positive with the limited level of activity I’m capable of.

Lately, I’ve been struggling more than usual with staying positive. I honestly don’t mind that my ability to do many of the things I love has been limited. I don’t really mind too much that I haven’t been able to work for so long and that I haven’t been able to go on the holidays I dream of.

There is JUST ONE thing that I really struggle with and I think it is something many women in my position are likely to be struggling with as well.

Many of my family and friends are either pregnant or have young children in their families. Although I am extremely happy and excited for them, it also makes me sad. Before the new conditions hit, I had believed that by now I would be a mother, or at least we would be trying for children.

Now my life is filled with so much uncertainty. Although I’m told that my conditions do not affect my fertility, many of the drugs I’m on at the moment can OR can affect the development of a baby. I’m not sure my body can cope with pregnancy or with looking after a young child. My bone density is low which means I have a higher risk of stress fractures and very weak bones. My pain is going to increase during pregnancy due to the pelvic congestion and all my other conditions have a 33.33% chance of getting worse as well based on what information I’ve been able to find.

Despite all of these issues, having a family of my own is the number one most important thing to me. Ever since I was a child (possibly even as young as 4 when my sister was born) I have wanted to be a mum.

If I had to choose JUST ONE activity I would like to achieve in my life it would be to have a child of my own.

I have a difficult decision to make and I feel we need to make it soon. To try for a biological child of our own or to adopt. There are treatment options available for some of my issues which I have been told we can’t consider until we’ve finished trying for children.

Whichever choice we make, I know that any child we bring into our family will be loved and cared for. I may not have the energy or strength to be a ‘normal’ active parent, but I will be the best mother I can be. We have a wide network of family and friends who I know would do whatever they could to help us as well.

What is your JUST ONE story?

Are there others out there who are struggling with decisions related to starting a family with multiple chronic illnesses?

“When the bloom of the Jacaranda Tree is here…

Christmas Time is Near!”

From Christmas Where the Gum Trees Grow, An Australian Christmas Carol

Photo (c) Megan S, December 2013

Christmas is usually a time of excitement for me. By now I’ve usually set up our Christmas tree and sorted out what I want to get everyone for Christmas (even if I haven’t bought them all), and I’m usually looking forward to all the celebrations; but this year is different.

I haven’t set up our Christmas tree yet, I have struggled to get the energy to even think about most of my Christmas presents, and I’m not really excited and looking forward to the upcoming celebrations (at least not in the same way as I usually am). Instead I’m still focussed on just trying to pace myself and get a better grip of this illness. Having said that, I am still looking forward to some parts of Christmas.

To me the most important parts of Christmas are the catching up with family and friends and celebrating together. This has already started for us this year. My sister is leaving for overseas this weekend, so I did an early Christmas brunch with her, my brother, mum and step dad. E and I also caught up with a group of our friends yesterday afternoon which was labelled a “Christmas Catch Up”. Both of these events were great as they were fairly small groups and just involved catching up and having fun, no expectations of presents, extra input from me, or staying for any particular length of time. They also illustrated to me that no matter how low key the event is, I’m going to be using a lot of my precious energy up at these events.

After each of the two events I have felt extremely drained and have literally crashed on the couch in a ball of pain and exhaustion. I’ve relied on E or my mum to make sure I still did all the things I needed to the rest of that day and the following day.

The next big Christmas event I’m aware of, is E’s family Christmas gathering on Christmas Eve (I’m sure others will come up in between and I have asked about when my work one is). This event, although not big in terms of the number of people there, does have certain expectations; presents and a sit down dinner. E and I have already had a chat with his mum about cutting back a bit on the presents next year because we’ve both found this year to be very stressful and she has agreed we can make them not an expectation next year. Dinner should be OK because everyone there knows what I’m going through and I’ve already been told I can go and rest when I need to, but it will still be a very long afternoon/evening and I’m going to need to rest up a lot before and after.

I believe E and I have agreed that this will be the only major commitment we make this year. Unfortunately this means that, unless by some miracle I have lots of energy, we will not be participating in my family Christmas lunch on Christmas Day. In some ways I’m grateful for this, as it is a very large gathering with lots of people. In other ways I’m a little disappointed, Christmas and Easter are the two times of the year that we see a lot of these people. Overall, I’m not going to feel too guilty about missing my family Christmas this year because we saw most of them at my sister’s farewell the other week.

All other Christmas catch ups will be paced out both before and after the actual day so that I have time to rest in between each event.

How do you deal with the expectations of family and friends during the holiday season?

Do you have any tips on getting through my first Christmas with chronic illness?

Related articles

• When the bloom of the Jacaranda tree is here.. (kellietope.wordpress.com)
• Preparing for the Holiday Seasons… (brainlesionandme.com)
• MCS and holidays – bah humbug (bohicalyme.wordpress.com)
• Managing Traditions. (asouthernceliac.wordpress.com)
• Simplify, Simplify, Simplify (noonegetsflowersforchronicpain.wordpress.com)

2 years ago today…

I married my best friend!

Photo (c) M. Vovers, 2011

E has been with me through the highs and lows of the last 10 and a half years.

I am so grateful for having him with me as support through completing my degree and joining the workforce and for being my rock now as I go through the process of diagnosis and management of this chronic illness.

Thank you so much for being there when I’ve needed you.

Without you I wouldn’t be where I am today.

I love you and I’m looking forward to the adventures life has in store for us in the future.

xoxox

Chronic Pain and Fatigue – Maintaining Relationships

Photo (c) Megan S, October, 2012

I’ve found since being ill I don’t get to see my friends as much as I like. And I’ve begun to realise if I don’t start taking a more proactive approach I’m going to lose touch with people that are important to me.

Over the past 7 months I’ve had to decline multiple invitations to events because I physically couldn’t make it at the time or location the event was being held. I attempted to make it clear in my declines that I would love to be there but just couldn’t do it.

Just recently it was brought to my attention that there has been some miscommunication and several of my friends thought I just didn’t want to spend time with them. Luckily this time round E stepped in and has explained in detail what I’m dealing with and what I can and can’t do. The next event (a Christmas catch up) has been organised for a time (early afternoon not late evening) and location (somewhere relaxed without too much background distraction) that works well for me and I’ve gladly accepted the invitation.

This situation has made me realise the precarious nature of our relationships with others when we suddenly fall with a chronic illness.

Obviously some ‘friendships’ will fall to the wayside but those that are important you do need to make an effort to maintain no matter what side of the relationship you’re on.

If you are the one who is chronically ill, you need to be very open with those who are important to you and clearly communicate your limitations and desires. You also need to make an effort to keep communication flowing regularly, even if it’s just a text message. This communication should be about topics other than your health unless you are asked.

Those who have friends who are chronically ill should listen carefully to their friends needs and try to accommodate them when making plans. They should also try to maintain communication, if their friend is to sick to respond they still appreciate the thought of an email or message. Finally they should only ask how their friend is if they really want to know.

Overall, maintaining relationships is about both parties being open and communicating clearly with each other.

This is something I’m still working on but I’m hoping to get better at it as I go on.

Thank you to all my friends who have listened and adjusted plans occasionally so that I can join in and feel part of the group still.

Have you had difficulties maintaining relationships?

What do you do to maintain relationships with those closest to you?

Related articles

• Expectations: The Good, The Bad and The Ugly (workthedream.wordpress.com)
• The Shame of Chronic Illness (jenusingword.wordpress.com)
• How to Maintain Relationships as a Migraine Patient (jodo1957.wordpress.com)