Putting the Holidays Into Perspective With ME/CFS & Fibromyalgia

Tuesday as I was driving home from work, the radio announcer mentioned that there are only 40 days left until Christmas and I immediately felt myself start to panic and stress.   It has been a really rough few months and I haven’t even started or began to start thinking about Christmas shopping and everything else that goes along with the holidays.  Once I heard that announcement, however, my old Type-A personality kicked in and I started thinking to myself everything I needed to do:  shop, wrap presents, make Christmas cookies, put up the Christmas tree, send out Christmas cards, plan a Christmas day meal – you all know the routine us women put ourselves through.

Then while my heart was beating faster, and I was imagining another major CFS flare happening because of the holidays, I had a lightbulb moment.  Why am I getting so stressed out?  Who says that we have to do all of these things we wear ourselves out over year after year?  Who says you have to bake cookies?  Who says you have to buy gifts and worry about getting them wrapped?  Who says you have to mail out Christmas cards?  The older I get, the more I start to realize that all of these things are what we’ve been conditioned to do because somewhere, someone told us that these were all things that have to be done in order to enjoy the holiday season.

This year instead of buying a bunch of gifts, I’m giving gift cards.  If I do give a gift, it’s going in a gift bag with tissue paper.  If it’s that important for Christmas cards to be sent out, my husband can do it.  We can go out to eat instead of me working for two days in the kitchen and having myself worn out from trying to prepare the perfect Christmas meal. 

To me, Christmas is about seeing my son happy and enjoying the holiday and if that means I have to give up a lot of other stuff so I can enjoy him that day, then so be it.  It’s just not worth it anymore to me to do all of this stuff that doesn’t do anything but make me sicker.  I have talked with  a lot of CFS & Fibromyalgia patients and it doesn’t surprise me how many do not enjoy the holiday season.  While Christmas is supposed to be about celebration, family, joy and love, for us sick ones it becomes more about stress, flares, and complete exhaustion.

I don’t want to feel that way anymore.  While I always enjoy my son’s enthusiasm and love of Christmas, I want to really feel that for once.  I don’t want to be so exhausted that all I can think about on Christmas morning is how I can’t wait for the next few days so that I can do nothing but rest and recover.  I don’t want those feelings this Christmas or future ones to come. 

So if you are getting stressed out and feel a flare looming because of everything you think you have to do for the holidays, just remember this post and that you don’t HAVE to do a lot of it.  There are ways to make all of these traditions we put ourselves through every year a lot easier and we deserve to enjoy the holiday season thoroughly!

ME/CFS, Fibromyalgia & Strategies For Improving Intimacy

I have written before on Fighting Fatigue and I have also read elsewhere that the divorce rate involving a chronically ill partner is 75%.  That is extremely high and my first marriage failed in part due the lack of support I received from my ex-husband.  He didn’t believe I was really ill and that lack of support and trust was a huge factor in me falling out of love with him. 

I just read some great advice last night on strategies for improving intimacy when ME/CFS & Fibromyalgia is involved by Bruce Campbell, PhD.  Dr. Campbell is a recovered ME/CFS patient and former consultant to self-help programs for chronic illness at Stanford Medical School. His nonprofit site (www.cfidsselfhelp.org) offers articles, low-cost online Self Help courses in moderated discussion group format, and free follow-up programs & support.

Thanks to ProHealth, part of Dr. Campbell’s series on “Recasting Relationships & Building Support” has been posted and this section includes the six strageties for improving intimacy. This is what Dr. Campbell found in his series from patients:

When CFS or fibromyalgia enters a marriage, one casualty can be intimacy between the partners. Pain, reduced energy, reduced interest, health problems of the partner, and increased responsibilities for the healthy spouse can all affect a couple’s sex life.

But, like other aspects of long-term illness, intimacy problems can be reduced as well.

When we asked people in our Self Help program to describe the effects of their illness on their sexuality:

• All those who responded said that illness had reduced their sexual activity.

• Many people mentioned having a much lower level of sexual desire than before, due to factors like ongoing fatigue and pain, and the side effects of medications.

• Other causes of sexual problems included the effects of menopause, relationship strains, and the medical problems and/or impotence of their partner.

Even though people said that they had either reduced their sexual expression or given up sex, most also reported using a variety of strategies that have either enabled them to adapt their sexual life to their illness or to connect with their partner in other ways.

One thing I would like to add that I know may cause intimacy problems is certain medications, particularly antidepressants in women.  Many of us take antidepressants for CFS and/or Fibromyalgia and certain antidepressants can cause a woman to not orgasm which can lead to sexual frustration and tension in the bedroom. 

Here are Dr. Campbell’s six strategies he recommends for improving intimacy.

Talking.  Dr. Campbell reports that several people stated their relationship improved with their spouse after they talked openly about their reduced interest in sex.  Couples started talking about the reasons why their sex drive has diminished or disappeared and let the other know it was not them personally.  Also, talking about what sexual positions caused pain and discomfort helped the couples also.

Alternative Activities, In Bed and Out.  Patients reported using other means of showing affection besides intercourse – cuddling, and satifsying their partner in other ways.  Hugging, kissing, holding hands, manual stimulation, and oral sex are all alternatives to regular intercourse if the sick partner is not up to it.  Finding other ways to satisfy each other can be a new adventure.

Planning for Sex.  Planning for sex allows the sick spouse to rest up for it.  We have to prepare and plan for everything else so why should sex be any different?  Sometimes we may just need to forget about the laundry for the day, not run the sweeper, and save that energy for our spouse.  By planning a date, it allows us to also know what we need to do that week to reduce work levels and other activities.   Taking advantage of what your best time of day is may be the time you want to plan your “sex date” with your spouse.  If you feel better in the morning, plan for then.  If you feel better in the afternoon, plan a time for then.

Flexibility and Experimentation.  Dr. Campbells says, “Given the often unpredictable course of CFS and FM, it helps to be flexible about when sex occurs and what positions and activities are involved.”  Try the different times as discussed above and different positions to see what works best.  One couple said that having sex in the shower made her feel better because of the heat.

Addressing Pain and Hormone Problems.  “Several people reported that their sex lives improved after treatment of pain and hormone problems. People reported treating pain by the use of pain pills, topical ointments, massage, and heat and by adapting how intimacy occurs.”  Using medication safely and as directed is most important, but he recommends:

• take pain medication when it will be at its peak effectiveness when you plan to have sex.
• you may want to avoid narcotics or tranquilizers so that your senses aren’t dulled.
• reduce pain by taking a bath before sex, getting a massage, and stretching.
• reduce pain by choosing positions that are comfortable and often changing positions. 
• use the pain control approach of distraction and meditation.

Emphasis on Caring. Dr. Campbell reported that: “A number of people distinguished between intimacy and sex, and said they and their partners focused on closeness and mutual caring.”  Sex is important in a marriage but couples can also focus on other areas of their relationship to remain close, caring and loving.

Finding Blessings In Unexpected Ways with ME/CFS

Yesterday as I was trying to rest on the couch, feeling miserable from my bad sinus infection and CFS flare, I was having a mini-pity party for myself when I saw something amazing on a television show that I feel I was meant to be tuned into at that particular time.  I was watching The Doctors and I viewed the story of a very courageous woman who suffers from the illness, Dystonia. Dystonia is a neurological movement disorder that made a vibrant, healthy, beautiful dancer into someone who has great difficulty moving and her limbs constantly shake and tighten up. When I saw Alex, I first thought she had Parkinson’s Disease because the shaking was so severe.

What stood out to me most of all was how Montel Williams, who was helping Alex find help in dealing with her illness, said that her illness is so visible to everyone. Alex went out in public with Montel for the first time in a very long time because she is very self-conscious and people make fun of her uncontrollable movements.  According to The Doctors bio on Alex:

Diagnosed in 2007, Alex is persistently reminded of her disorder because her muscles constantly involuntarily contract, forcing her body into repetitive and often twisting movements.

Alex recalls what it is like living with dystonia: “I just don’t want people staring at me like I’m a monster; I’m not. You’re looking at me in a dirty way, and it hurts. I just would rather have people have the guts to just come up and, you know, [ask] ‘What’s wrong? Are you having a bad day? Do you need some help?’ I would rather them do that than just stare at me.”

Watching Alex made me stop and think about how much those of us with ME/CFS vocalize the fact that our illness is not visible, therefore, people don’t understand.  After watching the trials that Alex goes through, and the ridicule from other people she receives, I’m glad when I walk down the street people aren’t staring at me because I am different.   I am glad that I have a disorder that is not visible to the world. 

When Montel took Alex out for lunch, he had to leave the table for a few minutes.  A woman came up and took Montel’s chair and Alex told her that seat was taken – her friend was sitting there.  The lady actually looked at Alex and told her, “I don’t believe you.  You couldn’t possibly have any friends”.  What an awful thing to say to someone who has no control over her body and what the disease is doing to her!

I know we as CFS patients have often said if people could just see what we feel like on the outside, they would understand.  But I don’t think they would.  It would just give people more ammunition to be cruel.  I found a blessing in ME/CFS today and I pray that Alex is able to get help and find her blessings.  I know she found a blessing in Montel Williams and The Doctors show.

How Do You Prepare For Vacations Or Big Events?

Vacations and the occasional big family event can be exciting and a lot of fun but for ME/CFS & Fibromyalgia patients, it can also mean a lot of symptoms flaring and confinement to our beds.  I always look forward to having time away but I dread it also because I know how much work goes into preparing for trips and how hard the traveling process is on my body.  I think for me just trying to remember everything and the constant mental work of preparing is worse than the physical aspects.

I am a list maker but that doesn’t even stop my brain from constantly thinking, “Did I forget something?” “Did I get everything done at home I needed to before we leave?” “Are all of the bills paid that are due before we get back?” To me this is a lot of stress. As my husband says, it is a lot of unnecessary stress but I’m sure you Type A’s know where I’m coming from!  Holidays have the same effect on me and I usually have the yearly post-holiday flare. 

So what can we do to help us physically get through vacations and big events?  I try to do as much as possible as early as possible before I know I have to go.  I will sit down with the calendar a few weeks before the trip or event and start making a list of what can be done now and what has to wait until the last minute.  Things like paying bills is something that doesn’t have to wait (unless there’s not enough money in checking to cover them all!), getting traveler’s checks, money, etc. from the bank are things that don’t have to wait. 

 I also will start packing what I can pack early also.  I have found the most convenient way to travel is to have duplicates of all toiletry items and cosmetics:  deodorant, fragrance, shower gels, lotions, skin care, makeup, toothpaste, toothbrush, shampoo, hairspray, razors, Q-tips, tweezers, mirror, hair dryer, tissues, feminine products, vitamins, etc.  I will also have empty pill bottles that I go ahead and fill with all of the medications I take.  If I’m going to be gone for more than a few days, I just take my bottles that I use daily.

Because my husband has a bad heart and I have a bad back, we try to pack light and then we take along laundry detergent and dryer sheets and will wash clothes while we’re gone.  This helps tremendously with not having such heavy luggage.   I will also sit down and make a list of everything we need to take from clothes, to snacks, to entertainment items for our son.  This is another reason we try to pack light because we usually have to take extra things along for him to do.

I try to make sure I have everything done that needs to be done as far as getting ready for our trip and around the house at least two days before.  The only thing I want to have to do on that last day is to pack clothes.  This way I have a couple of days to rest up and get my body prepared for the trip.  I do the same thing for holidays and big events.  I always make sure I have a couple of days before that are set aside to just relax.

What do you do to prepare for trips, holidays and big events?  Leave your comments!  You know I love to hear from you all!

Children’s Roles In the Home with Chronically Ill Parents

We all have found out that our chronic illnesses not only affect us, but our spouses and children as well. When just one person in the household is sick, the entire family suffers. In our house, both my husband and I are chronically ill so our son has been hit with a double whammy. I have discussed before on here the fact that I often feel guilty because I can’t physically do for him all of the things I would like and neither can my husband. But this is all our son has ever known so he doesn’t really know what he’s missing. It’s not as though we were healthy and then suddenly became ill. We both have been like this since before he was born. It still doesn’t help me feel less guilty, however.

In our household, we do give our son chores:  he has to make his bed everyday, keep his room picked up and he puts away his own laundry.  When I am having really bad days he will help me put things away and throw things out so that I don’t have to get up from lying down.  If he does his chores without me having to harp on him too much, then he gets a small allowance each week.  As he gets older, he will get additional chores and he will be expected to help with the lawn and helping his father take care of the outside duties.  

But I don’t believe that children of sick parents should carry the majority of the load around the house.  I think children should be allowed to be children and I could never put such a huge load on my son because I can’t do a lot of things.  It’s not his fault, he didn’t sign up for any of this and, in my opinion, it would be like punishing him for my illness.  That’s just my opinion, so please don’t anyone get offended (and no nasty emails, please!).  Everyone has to do what is best for their own family and for some families maybe this works but for ours it doesn’t.  My husband and I both agree that what we are not able to do on our own we will hire someone to do.  If our son is still living here while he’s going to college or for a while as an adult then he will be responsible for a lot, and he will have to help with the bills.  But right now he is a child and I feel he suffers enough by not having siblings his own age to play with and by not having healthy parents to play with him.

Our son is the type who likes to help, he wants to help and I do teach him things and let him help.  I am very proud of the fact that he is mature and thinks about his mom and dad and not only himself.  It makes me feel good to know that we are doing something right with him and that he is learning now what will one day make him a great man.  But if he were to say to me, “Mom, I want to do all of the laundry, do all of the dusting and vacuuming so you don’t have to and so you can rest”, I would not let him do it – not at this age.  I would let him help me and I would be working along side of him, but I could not lie on the couch or in bed knowing my 7-year-old is picking up the slack.  I wouldn’t allow it and my husband wouldn’t either. 

Their childhood goes by too quickly as it is.  I don’t want his memories to be that his whole childhood was spent taking care of sick parents.  What are your thoughts?  Do any of you share my feelings?

Coping Tips for ME/CFS & Fibromyalgia – the 1% Solution & Other Ideas

Thanks to How to Cope with Pain for including this post as part of their Pain Blog Carnival!  To read all of the selected posts, please click HERE. 

Dr. Bruce Campbell, PhD, a ME/CFS patient, said a woman with ME/CFS motivates herself when discouraged by aiming for a 1% improvement in some part of her life.  By thinking small, Dr. Campbell believes she discovered the secret for getting better with these illnesses.

When you have ME/CFS and/or FM, lifestyle change is a must and in order to cope and deal with them, you have to make changes.  Dr. Campbells says:

Very few people hit home runs with these conditions. The chances are low of finding something to quickly restore your old life. Most experts agree: the most powerful treatment for both conditions is lifestyle change, which means changing our habits and how we live our daily lives. This is a gradual process, but over time can be transforming. Hitting a lot of singles doesn’t grab the headlines, but in the game of living with CFS or FM, it’s a winning strategy.

I have personally found that dealing with the grief and accepting that I will never be the same again and be able to do the same amount of activity as I once did has improved my physical and mental health – particularly my mental health.  We need to move through the grief process, but I have known chronically ill people to get stuck in the grief cycle and continue to wallow in what once was.  They will cry and break down when they can’t accomplish a task that was once easy for them and they are still at this point after being sick for years.  I’m not a doctor, but to me the first tip with coping with chronic illness should be to learn to accept and move on.  But here are Dr. Campbell’s seven tips for coping.

Take planned rests.   Setting aside time every day for rest breaks can help reduce symptoms, increase stability and, ironically, reduce total rest time.  If you would like to try planned rest, set aside one or more times a day and find a quiet place where you can lie down with your eyes closed.  Be willing to make time for yourself and do this!  You are worth it!

Get support from fellow patients.  Serious illness is isolating and discouraging. Being in contact with fellow patients counteracts isolation and can offer inspiration, encouragement and practical coping strategies.  Join a local support group or an online support group. 

Identify what helps and what works.  Through self-observation, you can discover what intensifies your symptoms and what helps you to feel better. Then, over time, you can adjust your life so you do less of the things that make you worse and more of those things that help.  Dr. Campbell recommends making two lists:  one list for things that make your symptoms worse; one list for things that give you a sense of control.

Ask:  What can I do today?  Change starts with a single step. Ask yourself: What is one small thing I can do today for my health? The idea is to focus on a goal that is both specific and realistic, maximizing your chances for success.

Do a “should” review.  Do you feel guilty about all the things you think you should do but aren’t doing? It’s a common problem for people with CFS and FM. Illness limits what we can do, but often we are slow to adjust our expectations to fit our reduced abilities. One solution: do a reality check on your expectations.

Start a health log/journal.  Written records are a powerful tool for discovering what makes illness worse and what helps you feel better. With a few minutes a day of writing, plus some time spent periodically reviewing the records, you can see patterns and discover the many different factors that contribute to symptoms.

Identify what triggers a relapse.  Relapses are a common and often demoralizing part of CFS and FM, but it’s possible to reduce their frequency and severity. One place to start is by identifying those things that trigger setbacks. These factors could be actions you take, or events that happen to you.  Then you can work at reducing the frequency and severity of setbacks.

We’re All In This Together Regardless of Severity

Adrienne, author of the About.com Fibromyalgia & CFS Blog, wrote a post last week that really struck a nerve with me – Fibromyalgia, Chronic Fatigue Syndrome & Negative Attitudes Toward Each Other. Adrienne writes:

Those of us who have fibromyalgia (FMS) and chronic fatigue syndrome (CFS or ME/CFS) are all in this together, right? No one else really understands what we go through, and I truly believe that the best thing we can do is learn from each other.

That’s why it really bothers me when I see someone with FMS or ME/CFS take a defensive attitude toward other people with it. I see it most when someone who’s severely disabled starts to question whether someone not as badly disabled really has the condition. I’ve seen biting comments like, “I certainly can’t do all those things! Are you sure you have FMS?” or “If you’re not bedridden, I don’t think you really have ME/CFS.”

I have written about this subject over the years on this blog different times but it always bear repeating.  The more popular this site gets, the more exposure I get, and the more emails I get and social networking site comments from others suffering from ME/CFS leaves me no choice but to write about it again.  Sorry if this offends anyone, but no one with these illnesses should be comparing themselves and their symptoms to other sufferers.

People assume that if you are at a point in your life where you are functioning somewhat better than they are you have no idea what they are going through. As a ME/CFS and FM sufferer who has been bedridden several times over the years, I do not want to hear a sentence that starts with…”It could be worse” because I, as well as other sufferers who are semi-functioning know what worse is because we’ve been there and we will more than likely be there again.

Anytime someone starts a discussion with “It could be worse”, “At least you don’t have cancer/AIDS/etc.”, and continues to go on with how bad they have it, is clearly disregarding your feelings.  I had to cut off communication from someone I was very close to because all this person ever did was play the “I’m sicker than you are” game and I just got tired of it and it was not healthy for me to be part of that and I did what I had to do to make it stop. 

When someone has a chronic pain condition that is severe but they don’t suffer from extreme fatigue, naturally they are going to think that they would rather deal with fatigue than pain.  But us ME/CFS patients know that we would take the pain any day over the excruciating fatigue because we know what it is to have that fatigue.  My point is, regardless of whether you are in major pain or suffering from the devestating fatigue of ME/CFS, it’s all bad and we are all suffering together.  It shouldn’t be a contest.

Adrienne also wrote in her article about how she has encountered people who have more severe symptoms are questioning and doubting others with lesser symptoms that they are even sick.  We get this kind of crap from society why would we pull it on each other?  Life is too short and we don’t have the energy to waste on this crap.  Playing the “poor me” card gets old really quick and I am one who refuses to stand for it.  Regardless of how sick we are, we have to learn how to cope with being sick.  And yes, I can still say that regardless of how many times I have hit bottom with these illnesses. 

Why can’t we just be there for each other, support each other, say “I’m sorry to hear you feel that bad today” without comparing and judging?

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