Louise’s Tips For Managing Chronic Fatigue Syndrome – Part 2

Louise’s Tips For Managing Chronic Fatigue Syndrome  – Part 2Wedding Head Shot (with Dress)

4. Ask for help when you need it – Most human beings find it difficult to ask for help, or at least those in my culture do. But I think it’s quite a universal thing. And often people who have CFS are people who have previously been very high achievers and classic Type A personalities (just a generalisation, not gospel). So when someone in our society with a rather independent personality finds themselves with an illness where they can barely get out of bed – if they can even do that – it puts them in a very powerless position in many respects. Proud, independent go-getters do not find it easy to deal with this sudden loss of power and independence. I know I didn’t. And because of this I found it very hard to admit to even the people closest to me that I needed their support, either physically or emotionally.A Helping Hand

But when I have found the humility to ask for help from my friends and family at particularly difficult times, I’ve found it quite liberating. I have been worried at times that I would never regain my independence, but time has proven that I could and have done. There are still things I need help with and I admit that, ask for it, sometimes get it, sometimes don’t, and just keep moving on.

5. Try not to complain too much – Now this might seem like a contradiction to the above tip, but it’s not really. I just know that at times, because of how miserable I have felt physically and mentally, that I have not been a particularly pleasant person to be around. I never tended to take it out on my former husband, but I look back and realise that I did talk a lot about how awful I felt, minute to minute, hour to hour, day to day. Some of it was trying to make sense of it myself as the symptoms are/were so unpredictable, but I realise now that constantly talking about how horrible I feel and telling people my symptoms drags my friends and family down, and me with it.

I also realise that much of it was a plea for understanding and acknowledgement of an “invisible” illness that I so desperately wanted people to “see”. For the most part over the 17 years I haven’t really looked sick, and that is usually how people judge how sick a person is, whether that is reasonable or not. So I can see that much of my complaining and describing of my symptoms was kind of like a silent scream to people, wanting so much for them to know that though I may look ok, I’m not really underneath.

When people asked “How are you?” in the conversational, Aussie version of “Hey” or “Howdy”, I’d even go as far as deliberately not answering the normal “yeh, good thanks”. Instead, I’d say “Not bad” – then under my breath I’d say to myself “not good either”. Or worse, I’d actually say “I’m feeling awful actually” just to test out their response. That stuff was attention-grabbing from a desperately sad, angry victim of a mysterious illness. I am not that anymore. I’m a person who lives with CFS, not a victim of it or anything else. But it’s taken a long time to get to that.

6. Don’t let CFS become your identity – This is a related topic to the one above. Because we often cannot work and all we do day to day is try to deal with and manage our illness, we tend to feel we have nothing other than CFS, it’s symptoms, the emotions around it and various treatments or research to talk about. I used to say I’m a CFS sufferer, but I realised some time ago the power of language and how it creates our world. So I’ve changed it to I have chronic fatigue syndrome, so that it separates the illness from who I am. I also try to avoid the word sufferer now, even though there has been and still is a lot of suffering involved, because I am attempting to steer away from perceiving or portraying myself as a victim. That is my personal choice, but I certainly know I’ve developed quite a victim mentality over time, and that is one thing I’m continually working to transform.

I realise I have a lot more say over my life and the illness I have than even I am sometimes willing to admit – sometimes not as much influence as I’d like, but I have taken that step of cutting ‘sufferer’ out of my vocab when speaking of the illness I have. As you may notice I am also practicing referring to CFS as an illness I have, rather than “my illness”. That’s not always the easiest thing to do in conversation, so I sometimes do say “my CFS” or dealing with “my illness”, but if I can I steer clear of it. These are just subtle things in a way, but they can be very powerful in giving us some power back in our own perception and that of the people around us.

One other way people allow CFS to become their identity is by becoming an ‘expert’ on all the research out there on the illness. Be careful of that one because it can really drain you and get you down in the process. See tip #9 for more on this.

7. Surround yourself with beautiful, positive things that bring you joyI found very early on with this illness that I could very easily go down the path of thinking all doom and gloom. Now, this is not my natural default, but being hit with an illness no-one knows much about, often don’t even believe you have, and facing the prospect of having it for an indefinite period certainly makes even a cheery soul like me a bit depressed.

One of the things I found at that time was that I sought out comedy shows on tv rather than dramas, and basically looked for things that boosted my mood. I was lucky enough not to have major problems with memory and concentration as some people with CFS do, so I also started reading books that talked about coping with chronic illness, which led onto me discovering Louise Hay, Deepak Chopra, Wayne Dyer and other amazing authors in the mind-body realm. There are some fantastic resources out there on positive topics if you just look. I love books, but I’m also getting some great stuff off the internet. Blogs such as http://www.positivityblog.com are great sources of positive material.

Music has also always been a great positive boost for me, and I’ve used it a lot to get me through. If you have trouble reading, many of the authors like the aforementioned have books on CD/MP3. Also there’s a lot that can be downloaded for free from various sites to download to mp3.Sunset over Gramps

Attempt to  surround yourself with beautiful things or things that bring you joy – photographs of loved ones, a beautiful sunset, flowers, colourful knick-knacks, whatever makes it more enjoyable for you to be in your home – especially your bedroom!! I have also used drawing and art as therapy, and adding one of your own pictures to your wall can also be a great source of pride and joy.

8. Get treated for the things that are treatable – this is sort of similar to the find things that work and use them advice. But sometimes when we have CFS, there is such is mish-mash of symptoms, often weird ones that can’t be explained. I know I’ve sort of become a bit like “oh, that’s obviously just another part of the CFS and it’s not much use going to the doctor cos nothing ever shows up on tests anyway”. That attitude can become a bit of a trap, so if new symptoms appear, as much as it might be a hassle going through all the tests, it’s best to get them checked out in case they’re something different – and maybe they can even be treated!!! What a lovely notion that one is : ).

But also for other more long-term symptoms, it’s always good to get retested every now and then because some things may have new treatments available. Also, if you are suffering from depression as a consequence of the illness (my belief is it is usually as a consequence not a cause of CFS), then try anti-depressants. They may work, and if they give you a better quality of life, use them. Because of electro-sensitivity, the pain of my headaches is usually so intense by the end of the day that I need to take medication to get me to sleep. Sleep seems to be the only thing that improves the electro headaches. I realise this is not ideal, but it allows me to have better, quicker sleep, which allows me to have quality of life. Whatever the side-effects may be I am willing to deal with them at a later date in favour of being able to live my life as fully as possible right now.

9. Stay aware of new research, but don’t become obsessed with finding a cure and/or cause – When I was first diagnosed with CFS, and especially when I had to move home and give up my job because of the severity of it, it became like a mission for me to find answers and ‘fix’ myself. I did that for almost 2 years, and maybe it’s just part of the process – one of the steps of grief. I was kind of in denial during that time. When I went to a support group and heard one lady say she’d had CFS 20 years, I just thought she was exaggerating and that was absolutely never going to be me. Hmmmm.

When I finally accepted I had CFS, I found some of my symptoms improved, and I think that was because I wasn’t fighting so hard anymore against the idea that I had a chronic illness, which gave my mind and body a rest.

I know people who just have to read every piece of new research on possible causes and cures. I think it is important to keep up with the news, but becoming obsessed with it will just cause you more stress. I looked up a site on electrosensitivity the other day and although it was great to hear of people like me, it started to depress me after a while because at the moment there are few answers, just lots of talk of causes etc. I have chosen for now not to read anymore of that for a while. On the other hand, I’ve been really encouraged by a couple of things recently such as the discovery of a certain retrovirus in a large percentage of CFS patients in one study. I’ll be following that with interest.

I completed an Honours thesis on elite athletes who had suffered from CFS, but who had overcome it and made it back to the elite level. I also started a PhD before my pregnancy, which was looking into the quality of life of people with CFS, and how to improve it. I unfortunately wasn’t able to continue with it, and now my life has taken another path. During all that research, however, I discovered just how much literature there is out there on CFS – and that was 6 years ago, so there must be ooodles more now. Just be careful not to get bogged down in it all because it can get a bit depressing. Balance out your CFS reading with more light-hearted topics or novels.

I’ve realised through writing this that I actually use a lot of management tools and could offer many tips to people how to have the best quality of life possible within their experience of CFS. What I might do is keep writing them down and occasionally add another blog of a few more tips each time. Let me know what you think of that idea. I would truly appreciate any feedback from any of these tips – or any of your own.

Remember these are just based on one person’s experience (mine!) with CFS. Every person with CFS is unique, and thus has different needs.

In case anyone is wondering, I do have a Bachelor of Psychology and a first class Honours (Arts-Psychology) degree. I have also been trained and have worked as a telephone counsellor, and have started and run support groups for people with CFS. I am not, however, a psychologist or a counsellor, so all my tips are from my personal experience of CFS, not based on research or clinical experience.

If these blogs make one person’s life a little easier living with CFS, then I have achieved my goal.

Stay tuned for more tips over time.

Keep Smiling

Louise

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