CFS Moms Look Forward to Back to School Season!

As mothers, it is hard seeing our children off to elementary school for the first time when our children are 5 years old. These days, even though most children are in daycare part-time or full-time, starting elementary school is still a big step for them as well as for us.  For us mothers, it means that our children are growing up and that we aren’t needed as much as we once were and that is sad and can be scary also.   I remember crying for hours the first day of kindergarten, worrying about every little detail:  Did he make it to his class okay?  Did he get lost going from his class to the bathroom?  How in the world is he ever going to make it around that big school without me there to guide him?  I worried until I saw the bus pull up front at the end of the day that he was going to miss the bus.  But he stepped off the bus, I breathed a sigh of relief, and realized that he made it fine without me there holding his hand.

Once I got over my initial “breakdown”, I started to really enjoy having the house to myself during the day, especially during all of those awful CFS days where I needed to be alone to just be sick and try and sleep.  Then summer vacation would roll around and I would have to try and juggle keeping my son busy with my sleepless nights and CFS flares and I could barely make it most days.  I would end up locking myself in the bathroom, crying so that my son wouldn’t see me, because I was just so miserable.  I couldn’t keep up. 

Then I would be at the store or talking to other mothers and they would be talking about how they were enjoying their summer vacations with their kids and how they hated the thought of summer vacation ending.  I would feel like a rotten mother because I always dreaded the end of the school year and couldn’t wait for the summer to end.  On top of the guilt I felt for being so sick all of the time, I felt guilty for wanting my kid back in school so that I could get some rest. 

CFS not only robs us of the physical roles we need to play in life but it also robs us of any joy with our children and families.  It is our illness that wants the kids back in school – it isn’t us as mothers, because when we do feel well, we want the summer vacations to never end.  It’s the pain and the exhaustion that takes the joy out of taking a bike ride or a swim around the pool with our children – it’s not us as mothers. 

So if you’re a CFS mother reading this and you are feeling bad because you couldn’t wait for your children to get back to school, know that you’re not alone.  There are even a lot of healthy women out there who can’t wait for their kids to get back to school!  At least we have an excuse!

We Can’t Give Up On Ourselves When Everyone Else Has

Trying to find the courage, strength, and energy to continue to fight with ME/CFS & Fibromyalgia is enough to make us feel like we are going to go crazy but we have to dig deep and not give up on ourselves even when everyone else has.  For most of us, we have went through many friends, doctors, most of our family members and have no one but ourselves left to depend on.  I know that in my own personal experience, I have to give myself many, many pep talks – sometimes dozens of them a day – just so I can get through the day without falling apart or breaking down completely.  But I want to live a normal life – as normal as I possibly can – and I am so stubborn and bound and determined – that someway, somehow, I am going to make it happen. 

Also as CFS & Fibro patients, we have had to be our own doctors many times because the medical community has been less than there for us over the years so we have had to research treatments and different avenues to try in the hopes of getting well.  I am one who has been willing to try many different things over the years in order to get well or in the hopes of getting well.  I don’t believe in quick fixes or cures but I do believe that if I want to get any kind of relief at all, I’m going to have to help ME first and foremost.  Whether it be through medications, diet, alternative therapies – whatever – I have tried lots of things.  Some with good results for a while, some with no positive results at all.  But the important thing is that we can’t give up on ourselves and we can’t stop looking and trying to get help.

Of course, we do have to consider finances when trying therapies and there are treatments out there that I have had to quit because we couldn’t afford them any longer.  Diet changes can make a world of difference for many people and you know something?  How many times has your doctor said to you, “Try eating more fresh fruits and vegetables, less processed foods, less sugar, and see how you feel”?  I have felt a world of difference since I have given up eating sugar and carbs – it is amazing what it has done for my energy levels.  But a doctor has never once recommended cutting any of these things out of my diet – they just want to write out prescriptions for more and more drugs. 

Keep fighting for yourself- I am getting stronger every day and am looking forward to my next appointment at the doctor so he can see how much better I’m doing.  Hopefully I will continue to see results.  Believe me, my body still lets me know daily that I have CFS & Fibromyalgia – I’m being very cautious and watching what I do on a daily basis.  But I have found a new strength and a new belief in myself and I’m going to live, and be happy, and not let CFS & Fibro beat me down!

Guest Blogger Post: You Need to Speak to the Boss

Please welcome guest blogger, Karen, from Sofa & the City.  You can read her full bio below the post! 

I have always believed that it is naive to dismiss the role of the mind in M.E., or in any other illness for that matter. There is a lot of stigma around how M.E. is classified and I don’t doubt that it is a physical illness but does that really mean there isn’t a psychological component? The majority of people I know with M.E. are incredibly driven and determined to get well, spending a huge amount of their limited energy exploring ways of recovering. But we are all human with thoughts and fears around our illness/recovery, some of which become so deeply entrenched when we have been ill for such a long period of time.

I have tried a variety of treatments along the way, physical and psychological: diet, supplements, yoga, meditation, EFT, Lightning Process, The Gupta Amygdala Retraining Programme, The Optimum Health Clinic, relaxation, osteopathy etc etc!! My standard story to others and myself was that I was desperate to get better and couldn’t wait to get back to my career and essentially this was true. However, deep inside I knew that after 6 years of being really unwell and out of the ‘rat race’ the fear of how I would cope when I returned to work was getting bigger and bigger.

I had a long list of treatments I still wanted to try and hypnotherapy was on the list. And I am so glad it eventually made it to the top! As I approached my first session, I tried as hard as I could to be open minded and to be prepared to look deep inside myself for how I could be contributing to the cycle of M.E. This does not mean that M.E. is not a physical illness but it does mean that my thoughts and fears could be playing a part in keeping me ill. I wonder, for example, if after 6 years of being unwell how much the conscious desire and drive to recover has been dented by the self doubt that inevitably creeps in over time, ‘what if I never get better?’.

I’d never really thought about how powerful the subconscious is before I tried hypnotherapy. I am drawn to positive thinking approaches. I believe that the mind is powerful and that with drive and determination we are all able to achieve amazing things. However, your subconscious mind is 30,000 times more powerful than your conscious mind, so for any real personal change to take place, it must take place at the subconscious level. Or as someone said to me a few months ago, you need to speak to ‘The Boss’. (I like the idea that I have a boss, someone who knows better than me, can take control and get things sorted!)

Hypnotherapy has helped me to explore what is holding me back and to reinforce my belief in recovery. It has been really hard. Who wants to own up to their part in their own illness? Not me, that’s for sure! But I have and it has made such a huge difference to my energy that I can’t feel anything but positive about facing my fears. We are such complicated beings I can’t believe the layers of things that have come out of these sessions that have in some way contributed to my continued cycle of M.E.. Hypnotherapy hasn’t been a quick fix (shame…) but it has had a significant impact. Some of the changes are subtle. For example, I am more relaxed, kinder to myself and worry less. With M.E. it can often feel like the body is not working properly, physically, mentally and emotionally. Things that I used to take in my stride now knock me. And as with all illness, stress can really exacerbate the M.E. symptoms. So maybe, it is really not all that surprising that hypnotherapy has had such a powerful effect.

I have also been doing some self hypnosis Cds at home. They are so relaxing and uplifting. After hypnotherapy I feel like I can take on the world and I love that feeling. (I’m not sure how you take on the world from the sofa…but hey.) I also like the idea of having energy building time whilst addressing an ‘issue’. What a productive use of time and as a ‘Type A’ I like that!

Of course, I’m not saying that all physical symptoms can be relieved by hypnotherapy. I am just saying that when you are so unwell it is really hard to not have self limiting thoughts. The seed of self doubt can be very powerful. So, I intend to carry on speaking to the ‘Boss’ and keep reigniting my faith in recovery (and if I can sort a few other things along the way, even better!)

About me
I have been living with M.E./CFS for the last 6 years. I have always wanted to write a blog but it has just been another ‘thing’ on a long list of ‘things’ that I wasn’t well enough to do! I have been feeling better recently. I am a long way from 100% but I am feeling well enough to write a blog….woohoo!! Writing is my therapy, it is my way of making sense of the last 6 years, it is my way of celebrating that I am moving forward. I was going to have a party but I think a blog will be better. I can’t drink much anyway, I’m not good at staying up late and I can do my blog from the sofa. See a blog is a better fit! ‘Sofa and the City…’: Living with M.E. but still totally fabulous!!

I am 39 (God, how did that happen??) and live in a city centre apartment in Nottingham with my wonderful husband. For more thoughts from the sofa visit me at:  ‘Sofa and the City…’

More information on hypnotherapy
My hypnotherapy sessions are with a lovely lady called Julie Saunders. Her approach is very empathetic, tailored specifically to my needs, well thought through and effective. Her website is:  surfingthesubconscious.com or for more general information on hypnotherapy see: National Council for Hypnotherapy.

Having ME/CFS & Fibromyalgia Takes Strength

Today I went back to work after being off for two weeks and as I was making my way around the store, I kept thinking about how strong of a person one must be to live and cope with CFS & Fibromyalgia.  The old saying that “God doesn’t give you more than you can handle” must be true.  If not, look how many millions of us wouldn’t be here anymore? 

I feel that I have always been a very strong and independent person and while sometimes that has been to my detriment, it has helped me in dealing with these illnesses.  I think that because a lot of us have Type A personalities with CFS & FM, we have carried through with our determination in getting through the miserable times of sickness like we used to get through working lots of overtime and everything else we did to succeed.

I do get down and depressed at times, especially when I am experiencing a flare like I just went through the past two weeks.  But I feel that for the most part, I, as well as many others, have learned to put CFS & Fibromyalgia in a compartment in our lives and we have learned to do what we can, when we can, and take things one day at a time.  It is hard for most people to not know what their lives will be like one day from the next – and that is what we live with.  From the time our heads raise off the pillow in the morning (if they do!  , we have to live our day minute to minute, hour to hour.  Plans are never set – they are always a “maybe”.  We can’t depend on a set income because we don’t know how long we will be able to work, if at all, and how many hours we will be able to do on a weekly basis.  Because of this, we have had to learn how to be creative and very good at math – LOL.

It takes strength to live in a normal world when we are anything but normal.  Everything we come in contact with in life revolves around normal thinking, working, shopping, whatever it may be.  The world is not designed to accomodate sick people like us.  Yes, we can get handicap placards for our cars and ride the electric carts at the stores, but that’s about it for us.  

Employers don’t know what to do with us, our families don’t know what to do with us, and if we have any friends left, they don’t either.  We know that everytime we make a friend it probably won’t be for the long-term because they don’t know how to cope with our frequent relapses and constant cancellations.  So we often end up lonely, hanging on because of the strength and determination God gave us to somehow, someway get through life.  We are squares trying to fit in a round world – and it takes a lot of guts and strength to be different.  Even more so when we have illnesses that have had sugh huge stigmas surrounding them like CFS & Fibromyalgia. 

Be proud of who you are, flaws, sickness and all.  You are strong because you are still here -f ighting every day.

A Registered Nurse’s Advice On Working With Physicians

Dealing with doctors is so frustrating with illnesses like CFS & Fibromyalgia.  Back when I first became sick, CFS was rarely heard of and it was around the time when “yuppie flu” was heard instead of CFS.  Most doctors didn’t believe it existed at that time.  Today, there has been a lot more reported on CFS & Fibromyalgia (especially Fibromyalgia) and getting a doctor who believes is a little easier -but getting treatment hasn’t really gotten any better.  Because doctors don’t know what to do.  There are places now like the Fibromyalgia and Fatigue Centers who can help with the symptoms, but unless you have lots of money, it’s hard to keep up with the regimen. 

There have been many doctors and many times that I would have loved to have thrown something at doctors trying to tell me that the illnesses are all in my head, that I’m just depressed, and that I need to cut out stress and work less.  They made me feel (or I allowed them to make me feel) like I was a 2-year-old being punished for eating one too many cookies or something. 

I personally have had a hard time trusting doctors (rightfully so) and still find that even after all of these years that I hate even bringing up new symptoms I experience.  I have a great family doctor, but it’s hard to get past all of those years of ignorant doctors.  I doctor shopped for years before I finally found someone who would listen to me and take my illnesses seriously.  We can’t give up.  There are good doctors out there.  We just have to keep plugging away until we find them. 

Jenny Fransen, RN, and co-author of The Fibromyalgia Help Book: Practical Guide to Living Better With Fibromyalgia offers great advice and tips on working with your physician when dealing with CFS and/or Fibromyalgia. 

Prepare for the visit ahead of time to make the best use of your short time together.

Be sensitive to your own symptoms and concerns and give some thought to the questions that you might ask your doctor.

Keep a list handy to jot questions down between office visits.

Consider other resources for information, such as your pharmacist for medication questions.

As there is no magic bullet for Fibromyalgia, great patience is required to find a combination of therapies and medication to bring about improvement.

Recognize that there will be inherent frustrations for patients and physicians when treating a condition that continues to hold many mysteries for the researchers.

Realize much of your treatment is up to you: exercise, relaxation, stress management, pain management, pursuing additional therapies and treatments such as biofeedback, spray and stretch, and massage.

Learn as much as you can about your own disease, since you are the one who will manage the day-to-day problems that occur.

Actively manage Fibromyalgia-related problems, such as pain, sleep problems, etc.

During office visits be prepared to ask for what you need to manage your Fibromyalgia. Be as specific and as concise as possible. Don’t ramble.

Work with your physician to develop a plan of action should you have a flare-up so you can initiate treatment on your own. Can you increase your sleep medication or take ibuprofen for pain? What else can you do during a flare-up to reduce symptoms and feel better?

If you are having symptoms of depression, inform your physician. Depression can further disrupt sleep cycles and will need treatment.

Reinforce and thank the doctor for specific behaviors and techniques you find helpful. “I appreciate that you really listen to me, Dr. Olson.”

Learn to ask for what you need from your physician. “Would you explain to me what can be done to help me sleep better?”

Develop a good relationship with the doctor’s nurse and receptionist. Identify rules of the office: doctor’s day off and when the best time is to call and leave a message. Know the nurse’s name and ask for him/her when you call. Be patient if they are unable to call back immediately.

Identify any bad feelings you might have about delayed diagnosis, insensitive treatment, etc. Resolve these if possible with the appropriate person, in person or by letter. In this way, you avoid carrying bad feelings toward healthcare providers into future relationships.

Should you and your physician have difficulties, try to identify problems and work to resolve them. You can put your feelings into a letter if you aren’t able to express them in person.

Avoid angry or defensive communication.

If your physician has told you to return in three months, you can make an appointment earlier to discuss your questions or concerns if necessary.

If a problem arises with medication or treatment, ask if you can call for an answer rather than make another appointment.

Be assertive and take responsibility for your own treatment.

Remember you are in charge of your own treatment program.

To read the entire article, please visit this link on ProHealth.

Putting Work, Life, & Health Into Perspective

Here in PA, we have been having some really bad weather over the past week – two blizzards within 5 days.  That is a lot of snow!  The snow itself was bad enough but add to that the wind and the size of the snowdrifts have been unbelievable!   I was supposed to work last Saturday morning from 7 a.m. – 11 a.m. and my husband told me the night before I wouldn’t be able to get out of the driveway in the morning and he was right.  I got up at 5 a.m. to look outside and there were 4 ft. snowdrifts around our house – I couldn’t even get the door open to get outside if I wanted to. 

Because I have to give my job a 2-hour notice if I can’t make it in for a shift, I went ahead and called in and told the night manager, who is on duty until 6:30 a.m. daily, that I wouldn’t be able to get in to work my shift because we were snowed in.  He acted as though he didn’t believe me and he was rather rude to me about the whole thing.  When I went into work Sunday evening, I found out that the managers were telling people that if they really wanted to get to work, they would have found a way.  I’m sorry, but I am not risking my health, which is already bad enough, to go out and shovel through 4 ft. snowdrifts so that I can earn a couple of dollars.   It is not worth it to me.  I will also not put my husband’s health at risk in order to get into work.  Someone who has had 7 heart attacks and open heart surgery does not need to be out in weather conditions like that just so I can go and take crap off of people for a few hours.  NO WAY – NO HOW – I REFUSE TO DO IT! 

I surprise myself sometimes now when I find myself saying and thinking things like this because at one time, I would have done whatever it took to get into work, even if it meant risking my health shoveling through large amounts of snow or driving on snow and ice-covered roads.  I think so differently now and I often think that if I would have had this attitude 20 years ago, I wouldn’t have ruined my health and CFS might not have ever been part of my life. 

I am glad I finally wisened up, got a grip, and was able to put things in perspective and can now realize what is important and what isn’t.  Life is so much easier when you don’t worry about pleasing everyone or worry about what everyone else thinks of you.  Even as sick as I am now, I still enjoy life much more than I did when I was a workaholic.  Back then, I basically lived to make everyone happy, including my boss, and I was miserable.  I felt like I had to be all things to everyone and the real me was lost.  I felt as though everything was my responsibility no matter what it was and I could find a way to justify to myself that everything was my responsibility.   

If I could go back in time and change things, I definitely would do a lot differently.  Wouldn’t we all?  I would not have ruined my health for people and things because guess what?  Those people are no longer in my life that I worked so hard to please and the things I worked for are no longer mine either.  What I have to show for all of that hard work, stress, strain, and thousands upon thousands of hours of work is a sick, diseased body that can never be anything close to what it once was. 

My son has also helped me put life into perspective and he has been the most precious, glorious blessing to me.  When I look at him, I want to do better – I want to be better.  I want to be healthy and well because he deserves a mom like that.  But we can’t go back and change what we’ve done.  The only thing we can do is learn from our mistakes, move forward, and help other people to not do the same thing to themselves.  That is what I hope someone gets from reading this.

Depression Around the Holidays for ME/CFS & Fibromyalgia Patients

I know a lot of people don’t understand why I don’t look forward to Christmas, but if you suffer like I do, I know you know where I’m coming from.  For me, the holidays just represent more work, more exhaustion, more flares.  I try my best to stay upbeat for my family but all I can think about is how all of the extras of the season are going to come back to bite me with a bedridden flare.

This year is even more of a worry for me because we have additional things going on that will make this holiday season very busy.  I always start to feel depressed and all I want is not to feel that way.  I guess I need to put that on my Christmas list for Santa…no depression for Christmas.  I know that it is common for us with chronic illness to become depressed around the holidays and article after article will give ideas and suggestions on how not to be depressed around the holidays, but who am I kidding?  I’m tired of writing those articles when I’m not feeling it myself. 

Getting gifts ready, whether they are wrapped or put in gift bags, shopping…all of the little extras that “normals” take for granted are just added stressors for me.  Trying to remember everything is another problem.  My mind is constantly going with what I can’t forget, who I still need to buy presents for, etc.  Lists aren’t even working for me this year because I’m then wondering who I forgot to put on the list.  It just goes on and on and I want the stress to be over! 

I think I need to up my Prozac over the next couple of weeks until the holidays die down.  Trying to talk to others about this doesn’t help because they don’t get it.  Most people suggest that you just don’t worry about it.  That’s easy to say when they are the ones who can wait until the last minute to do everything and still have lots of energy left over.  I don’t have that luxury.  None of us do who are sick.

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