Sick Lessons Podcast Interviews Me

At the beginning of the summer, I wrote here about a brand-new chronic illness podcast, Sick Lessons, hosted by my online friend, Sheryl Chan, of the A Chronic Voice blog.

Sheryl's latest episode features an interview with. ... me! We talked about living with chronic illness, my family's journey the past 20 years, lessons I have learned, how to cope, and much more. Best of all, we had a lot of fun, and that comes across in the video, as there is a lot of laughing! Sheryl and I have interacted with each other online for many years, on social media, as chronic illness bloggers, and as fans of each other's blogs, and as you'll see in the video, we had a blast finally getting to chat "in person." And this was no small feat, since we live on opposite sides of the world and are exactly 12 hours apart.

You can watch/listen to the episode on the Sick Lessons website, on YouTube, or I will include the video here in this post. If you prefer to read, Sheryl has provided a full transcript, both on her website and on YouTube (at the above links).

I hope you enjoy watching/listening to the interview as much as I enjoyed talking with Sheryl. In fact, one of the things we talk about in this episode is how powerful and encouraging it is to connect with someone else living with chronic illness.

Tell me about YOUR experiences with chronic illness. 

Could you relate to the things Sheryl and I talk about here? 

What lessons have you learned from your life with chronic illness?

Chronic Illness Caregivers

Did you know that every November is National Caregivers Month? I wanted to acknowledge it and share some resources because so many of us living with chronic illness either have family caregivers helpings us or are caregivers ourselves. And some of us (like me!) fall into both categories.

There are some general resources, including tips, community, and more, available for all kinds of caregivers through the Caregiver Action Network. They also include graphics and tags for sharing on social media, to help connect with other caregivers.

For those specifically dealing with ME/CFS, either in themselves or those they care for, there are several excellent resources.

Solve ME has Resources for People with M.E. and Caregivers, including lots of great information on symptoms, post-exertional malaise, applying for disability, finances, finding a doctor, and more.

#ME Action has a whole set of resources specifically focused on caregivers, including a Facebook group for support, a newsletter, and periodic virtual meet-ups for caregivers.

American ME and CFS Society also offers a long list of tips, plus additional resources for caregivers of those with ME/CFS.

I also have resources for caregivers. My book, Finding a New Normal: Living Your Best Life with Chronic Illness, includes chapters on When Your Child Is Chronically Ill and Coming of Age with Chronic Illness, plus the entire book is helpful for caregivers in not only understanding what their loved ones are going through but also practical ideas on offering emotional support.

Ten years ago, I started a Facebook group, Parents of Kids & Teens with ME/CFS and Related Illnesses, which is now being managed by several other wonderful parents. It's a warm and compassionate group of parents from all over the world (1600+ now), but it is also an amazing collection of experience and knowledge, with parents helping parents with treatments, finding doctors, and school issues, as well as offering each other emotional support. To join, just follow the link, click the Join button and answer the questions (adult caregivers of adult "children" are welcome, too).

 

Finally, if like me, you are both a patient and a caregiver (besides my grown son, I am also helping to care for my elderly father-in-law with dementia), check out my video presentation from this year's Parent + Caregiver Summit, Caring for Others When You Need Care Yourself.

And my own personal tip, gleaned from the experience of my husband and I is ... Give yourself a break! Even if you can only manage an hour or two, find someone to lend a hand (family member, friend, or hire someone) so that you can take some much-needed time off. You won't be able to help your loved one if you are exhausted and stressed yourself. I wrote about this on the blog recently in a Weekly Inspiration post: A Much-Needed Respite.

What are YOUR experiences as a caregiver? Are there resources for caregivers that you recommend or have found helpful? Please share your thoughts, tips, and experiences in the comments below.

Happy National Caregivers Month!

Free Parent & Caregiver Summit - Monday!

Hi, all! I just wanted to give you a heads up that there is a wonderful free virtual event coming up next week: Parent & Caregiver Summit.

A virtual friend from the Parents' support group I started runs these once or twice a year, and I am excited that she asked me to be a speaker this time! My presentation topic is Caring for Others When You Need Care Yourself, something that many of us can relate to.

And there are LOTS of other speakers, talking on topics relevant to us caregivers: organization, financial needs, cooking, helping disabled kids with school, taking care of your own needs, and more! You can learn more about the summit here (scroll to the bottom for the list of speakers and topics). 

Best of all, the organizer, Moira Cleary, is a busy mom/caregiver of sick kids herself, so she understands your issues and limitations. The virtual event runs for three days, next Monday through Wednesday, but she's set it up so that you can watch the presentations live OR later, whenever you can fit in the ones you're most interested in. It's very flexible. You'll also be able to chat with the speakers and the other participants, just like in a real conference!

I hope to "see you" at the Parent & Caregiver Summit next week! Sign up now--it begins on Monday morning (but again, it's flexible so you can join in whenever convenient).

Weekly Inspiration: Come Together

We had another successful get-together with our local chronic illness support group last night when we hosted a potluck dinner here at our house, with about 20 people. Some who attended were old friends, of the original five families that I gathered together over eight years ago, and some were new group members, struggling with their own or their children's illnesses or even still seeking a diagnosis. We talked for hours, shared our challenges and helpful advice with each other, and just laughed and enjoyed each other's company, too.

The adults and parents traded a lot of stories, experiences, and information, and the young people bonded. We had a new 21-year old young man here with his parents whose ME/CFS has recently forced him to greatly reduce his college work. He and my own 24-year old son hung out together in our basement. My son says they talked a bit about their illnesses, especially the isolation and challenges of being chronically ill with healthy friends, but they also just chatted about favorite TV shows, video games, and Pokemon! It can be incredible - sometime even life-changing - just to be able to relax with a friend who totally "gets it."

To read more about our own local group, Birds of a Feather describes how the group started and how I found those original other four families. That first local meet-up was just us moms (all with sick kids) at a local restaurant for lunch. That was followed by a second "mom's lunch" at the mall with another new family added, only this time some of our teens came along to meet each other. That was quickly followed by a family picnic, where all the kids and some husbands/fathers joined us, as well as two more families. That was a resounding success, and by then, we all felt like old friends (in addition to helping each other with treatments, doctors, school accommodations, and more). If you're still not convinced of the benefits of meeting up with others who are similarly sick, check out Party for Chronically Ill Kids, which always makes me tear up, thinking about how our kids bonded and what big a difference it made for them to meet others like themselves.

Our local group now includes more than 40 singles and families - some sick adults, like me, and some healthy parents with sick kids/teens/young adults - from five states (we live in Delaware, which is tiny!). Last night's get-together proved once again how powerful it is when patients and their families come together. One mom hugged me as she left and thanked me for hosting, saying it had been a life-changing evening for her - which is just what we all said those first times we got together!

Have I finally convinced you of the benefits of connecting with others locally? This article I wrote for ProHealth, Birds of a Feather: The Joys of Community, includes tips on how to find others nearby with the same or similar illnesses.

Now, go find your people!

Weekly Inspiration: ProHealth - Coming of Age with Chronic Illness

Happy weekend! Summer has been so incredibly busy around here, with my adult sons in and out, all kinds of crises, and some travel (though very little actual vacation time!). I hope to post more on the blog in the fall.

Today, though, for my Weekly Inspiration post, I wanted to share my latest article, published this week on the ProHealth website: Coming of Age with Chronic Illness. You can read the full article at that link.

This is a topic near and dear to my heart, as my oldest son - who's had ME/CFS for about 14 years and 3 tick infections for the past 11 years - just graduated from college. He was mostly couch-bound during his last two years of high school and worked hard for six years to get an engineering degree. Besides our own experiences, for this article I also reached out to the wonderful group I run on Facebook for Parents of Kids & Teens (and Young Adults) with ME/CFS and Related Illnesses. Everyone agreed that maturing and becoming an adult with illnesses that are so limiting carries with it huge challenges, and the parents in the group came up with some great ideas and tips for helping your teen and young adult kids. I wish I'd read their advice about 10 years ago!

If you have sick kids, of any age, you might also be interested in an earlier article I wrote, When Your Kids Are Chronically Ill, which includes coping strategies for both sick kids and their parents.

And if your kids are healthy, but you are the one who is chronically ill, then check out The Challenges of Being a Sick Parent.

Finally, if you are wondering HOW my son managed to get through college with ME/CFS and 3 tick infections, it was due to our relentless (and somewhat successful) search for treatments that would help. He and I have both improved significantly and can now live fairly active, semi-normal lives again. This post on Effective Treatments for ME/CFS summarizes the treatments that have helped us the most, with plenty of links to more information.

I hope you are enjoying a lovely weekend, and that this information helps to inspire you and your family to improve your lives with chronic illness.

P.S. If you want to join the Facebook group, Parents of Kids & Teens (and Young Adults) with ME/CFS and Related Illnesses, please answer the questions that pop up after you click "Join" - that is the only way we have now to screen potential members (the group is for parents of sick kids (of all ages) only). We also have a separate group for teens and young adults who are sick, Teens with ME/CFS and Related Illnesses.

The Challenges of Being a Sick Parent

On April 6, my article was published on the ProHealth website's Inspiration Corner: The Challenges of Being a Sick Parent. I know that many of you can relate to this topic - trying to be a good parent when you are the one who needs to be taken care of.

I have written about this topic many times here on my blog - you can click on the "parenting" category at the bottom of this post to read older posts like Who Takes Care of Mom? and Taking Care of Me.

For this article, though, I also turned to some experts - other sick parents. I asked for their input on the biggest challenges of being a parent with a chronic illness and also their tips and incorporated those into the article.

I would love to hear more feedback from other sick parents. Take a look at the article below & let me know in the comments:

What are YOUR biggest challenges as a parent? And what are your tips for coping?

The full article is reprinted here:

The Challenges of Being a Sick Parent

Living with chronic illness is a huge challenge, but when you are a parent, there are additional burdens to bear. Parents are supposed to be the caretakers, always putting their children’s needs first. There is a lot of pressure in today’s world to be an involved parent – to go to every school function and sports game, to volunteer for your child’s organizations, to give amazing birthday parties, and more. Plus, most parents love their children unconditionally and want to give them the best of themselves. So, what happens when mom or dad is the one who needs to be taken care of?

Based on my own experiences and those of other sick parents, being a parent with chronic illness brings many difficult challenges. First and foremost are feelings of inadequacy, self-pity, and – the big one – GUILT. You may feel bad about all the things you can’t do with your kids, the plans you had for being an ideal parent before you got sick, your kids having to take care of you instead of the other way around, and even that your kids don’t know the real you, the person you were before you got sick. These feelings of guilt and inadequacy can eat away at you, adding to the physical pain and discomfort you already feel from your illness and even making you sicker.

From a practical point of view, there are the challenges of how to get everything done – around the house, taking care of the kids, and shuttling them to activities. Many of us still have old expectations from our lives before getting sick, of getting everything done, being a perfect parent, and juggling house, kids, work, and more. Not being able to do it all anymore can make us feel even more guilty and helpless. These kinds of negative feelings – piled onto the pain and exhaustion of your illness – can leave you feeling impatient and angry, perhaps even lashing out at your family, which can lead to even more guilt, in an endless cycle.

So, what can you do to break this cycle and be a better parent while sick? Parents in an online support group helped to come up with these coping tips:

Accept the new you and your life as it is today.

To your kids, you’re just Mom or Dad – they accept you as you are and love you. You need to accept yourself as you are now, too. This is your life for now. It’s not how much you can do that matters; it’s how much you love them.

Spend time together.

Maybe you can no longer take them to a museum or water park. Focus on spending time together in a way that you can manage – enjoying a movie or TV show together, reading a book in bed, playing a quiet game – and treasure your time with them. Show them that you enjoy their company. It’s trite but so very true: their childhoods really do go by in a flash, so cherish each day.

Drop the guilt.

No more guilt or self-pity: you are enough, just the way you are. Instead of wallowing in feeling bad about what you can’t do, focus on your kids. What brings them joy & makes them happy? Instead of guilt when you can’t do something, cultivate a Buddhist principle called mudita, finding joy in the joy of others. Share in your family’s joy even when you can’t participate. Have them send you photos, text them while they are out, and experience their joy vicariously. When your child comes home from an outing all excited, give him or her your full attention and share in their enthusiasm, even if you can’t share in their activities.

Take care of yourself.

As parents, our natural inclination is to sacrifice our needs and put our kids first. But the more exhausted and sick you are, the harder it is to be the kind of parent you want to be. So, take care of yourself– physically & emotionally – so that you can be there for your kids when they need you.

Lower your expectations.

Part of accepting yourself as you are now is dropping those old expectations of the ideal parent. It’s OK to get cupcakes from the store for your child’s birthday, not to volunteer at school, and to let the house get messy. It’s even OK to limit your kids to just one activity at a time, as we did – they may be better for it, with downtime to be creative and relax. Focus on spending your limited time and energy with your kids. For events outside the house, concentrate on those that are most important to your child and plan to rest before and after. Let go of the rest.

Get help.

With your partner, family members, and friends, decide how to maintain the house and yard. Don’t be afraid to ask for help – your loved ones want to help you but probably don’t know what you need. Don’t forget to get the kids involved in helping with the chores! Enlist parents of your kids’ friends to help with carpooling. When an event comes up that you can’t attend, invite grandparents or other family members or family friends. Hire help if you can afford it – consider this no longer a luxury but a necessity in your budget.

Looking back at my sons’ childhoods and the young adults they are today, I can tell you first-hand that there are some silver linings to being a parent with a chronic illness. Your kids will grow up with more empathy and compassion than most and will grow into caring adults. Having to help around the house makes them more responsible and independent. If you previously worked outside the home, you will be present more and have more time with your child than most parents do. This can result in closer relationships than most parents and children have, especially as they grow up. In a slower-paced life, your kids will grow up with a greater sense of peace and the ability to find joy in small moments every day. It’s not easy, but you can be a good parent in spite of your illness. Your children may actually be better for it in the long run.

New Article at ProHealth: When Your Kids are Chronically Ill

My latest article has been published in ProHealth's Inspiration Corner: When Your Kids Are Chronically Ill. You can read the full text of the article at that link (and I will post the full article here on the blog in a month).

As readers of this blog know, I have plenty of experience in this area, since my own two sons got ME/CFS at ages 10 and 6. They are now 22 and 19, so we've dealt with chronically ill kids for well over a decade. Our youngest is now fully recovered after 10 years with mild ME/CFS that was well-controlled by treating Orthostatic Intolerance. Our older son has had a tougher time, also taking on Lyme disease and two other tick infections (bartonella and babesia) when he was about 12 (though they went undiagnosed for over three years). He is now in college, living mostly on his own. He still struggles with ME/CFS and the three infections, though with treatment he is able to take three classes a semester, work part-time, and enjoy an active social life.

In addition to all that personal experience, I crowd-sourced this article with input from the parents in our Parents of Kids & Teens with ME/CFS and Related Illnesses group on Facebook. The parents there had some wonderful ideas on not only how to support your kids but also on how to take care of yourself, as the role of constant caretaker is a tough one (and many of the parents are sick themselves, like me).

If YOU have children, teens, or young adults who are chronically ill, check out the excellent advice from our group in the article. You are also welcome to join our Facebook group for parents (keeping in mind that is is ONLY for parents or other adult caretakers of sick kids, teens, and young adults). There are parents in the group whose kids have ME/CFS, fibromyalgia, Lyme and other tick infections, EDS, POTS, and other related conditions. Just click the Join button at that link. Then watch your Facebook messages because that's how we confirm membership for the group.

Do you have advice for other parents of sick kids?

New ProHealth Article: The Challenges of Being a Sick Parent

My latest article has been published on the ProHealth website's Inspiration Corner: The Challenges of Being a Sick Parent (you can read the full text of the article at that link). I know that many of you can relate to this topic - trying to be a good parent when you are the one who needs to be taken care of!

I have written about this topic many times here on my blog - you can click on the "parenting" category at the bottom of this post to read older posts like Who Takes Care of Mom? and Taking Care of Me.

For this article, though, I also turned to some experts - other sick parents. I asked for their input on the biggest challenges of being a parent with a chronic illness and also their tips and incorporated those into the article.

I would love to hear more feedback from other sick parents. Take a look at the article & let me know in the comments:

What are YOUR biggest challenges as a parent?

How do you cope?

Living for Today and Looking Forward to Tomorrow

Once again, I haven't been online much this week. We had one son returning from spring break in Florida, another leaving for spring break in the Bahamas with his girlfriend's family, a 2-day Easter celebration to accommodate both boys' comings and goings, and a mini-getaway this week for my husband and I. Our sons enjoyed tropical spring breaks and we drove 2 hours to camp at the local beach, where the weather was low 40's F and raining! ha ha What's wrong with this picture?

Obviously, from all this activity, I am feeling much, much better, thanks to getting this latest yeast/candida flare-up under control. After a couple of months of infirmity, I am now back to my recent baseline, which is pretty good (see my 2014 summary and How I Improved in 2011 for information on which treatments have helped me).

I very much enjoyed our few days away together, though this is a big change for my husband and I - our first time ever camping in our pop-up trailer on our own and our first spring break without the boys in 20 years. We had a very nice time, in spite of the weather. However, I realized last night that I was also happy and excited to be back home and getting back into my normal routine. My head was spinning this morning with all the things I want to do - blog posts, articles to write, ideas to pitch for writing, etc.

I have been trying to compose this post in my mind all day, but I'm having trouble describing exactly how I am feeling.

Basically, I am very happy with my life and looking forward to every day. I am still quite limited by my illness - in fact, laundry did me in this morning! - but I feel content with what I have and excited for everything that comes next.

Perhaps this feeling is so exciting to me now because I know what it is like when it is missing. During the first years of my illness, I felt a mental fog and lack of motivation that were directly tied to the severity of my illness. Like many people with ME/CFS, when I treated underlying infections with antivirals, the first improvement I noticed was a mental clarity and a return of enthusiasm and motivation, like someone had lifted a dark curtain from in front of me. That's why I no longer take these feelings for granted.

I still feel like I'm not explaining this well.

Life with ME/CFS has given me a gift - a sense of gratitude for what I have and an ability to find joy in small things. Even when I am sicker and more limited - like I was for the past two months - I am still excited about the possibilities in my life. There are so many good books to read, audio books to listen to, great movies and TV shows to watch. Even when I am stuck on the couch, I can still write a bit (not as much as when I feel better), and I am bursting with ideas.

At the same time, my husband and I are starting a transition that will last for several more years. We have one son in college, living on his own, and one who is a junior in high school and beginning to look at colleges (and rarely at home anymore!). Soon, they will both be out of the house. In the meantime, they have already gone off on their own spring break trips, instead of our old family trips, and have told us they no longer want to take a long family vacation in the summer. And while this makes me sad and very nostalgic for their younger years, I also feel a sense of excitement about the future. My husband and I are starting to talk about what kind of a camper we might get when we trade in the pop-up in a few years and the traveling we want to do on our own. There is a lot to look forward to and so much that I am excited about.

I wrote previously (back in 2007!) that my chronic illness psychologist, whose grown son had ME/CFS, used to like to ask me "What Are You Looking Forward To?" It was her way of testing my mental state, to see if I was depressed or merely feeling frustrated with my limitations. Right now, there are so many things I am looking forward to, so many things I want to do. Yes, I am still limited by my illness, and I still tend to plan far more things to do each week than I can possibly accomplish, but I am happy. I am living for today and enjoying each moment while also looking forward to tomorrow.

What are you looking forward to? What makes you happy?

One Son Recovered?

Things have been crazy around here, with a visit to help my father-in-law sort through his house to get ready to move here and my dad having a 7-hour surgery yesterday as a first step to treating stage 3 melanoma. So, I am pretty exhausted and experiencing lots of stress.

But among all the bad stuff, we've had some good news, too. My 16-year old son has weaned himself off his Florinef (medication for Orthostatic Intolerance - OI) for the first time in 8 years, with no apparent ill effects! We tried the same thing last summer, but his symptoms flared up. So, after 8 years, he is now taking no Florinef, potassium, or salt tablets...and so far, he seems to be doing well. He's been very active - playing soccer, golf, biking, etc. in the summer heat, plus going to PT several times a week - and he's been feeling great.

His CFS has always been mild, and he fits the profile for those with the best chance of recovery (childhood onset, mild symptoms, up and down pattern, abrupt onset).

His symptoms began at age 6 (1st grade), at the same time as his older brother who was 10. Our younger son's symptoms were different, though, than mine or his brother's. His main symptoms were pain-related: chest pain, back pain, headaches, plus in his 6-year old words, "just feeling bad all over." He showed the classic post-exertional crashes and crashes when exposed to a virus but in between those bad periods, he felt fine. We talked privately to his pediatrician about our suspicions (by then his older brother and I were both diagnosed with CFS) but held off on officially diagnosing him - he was so little and still functioning well much of the time that we didn't want to saddle him with the label of being sick.

By spring of 3rd grade, he had missed over 35 days of school, and the principal called us to find out what was going on - at that point, his pediatrician ran all the necessary exclusion tests and officially diagnosed him with CFS. I had discussed his symptoms with Dr. David Bell (pediatric CFS expert, now retired) and Dr. Peter Rowe, pediatric CFS and OI expert at Johns Hopkins. They both thought that most of his symptoms were OI-related and would improve with treatment, so we started him on Florinef (our pediatrician worked with Dr. Rowe by phone, something he is still happy to do to help educate other doctors about CFS and OI in kids) which had helped out older son considerably.

The Florinef worked wonderfully - it cleared up all of his pain symptoms and greatly reduced the post-exertional crashes. On Florinef, he was symptom-free about 95% of the time and could do just about anything he wanted. He would still crash occasionally if he really overdid (we had an "only 1 sleepover in a row" rule!) and a cold might knock him out for a week or so, but otherwise, he has lived a fairly normal life from starting Florinef at the end of 3rd grade through the present.

He typically missed between 12 - 15 days of school each year for those occasional crashes but felt perfectly well the rest of the time. He's been playing soccer since he was 4 years old and has been on his school soccer team since starting high school, as well as a travel team this past year. He has had some injuries that sidelined him (he's hypermobile and prone to soft tissue injuries), but CFS/OI had little to no effect on his athletic life.

This past year, he missed only 3 days of school the entire year! That's a pretty amazing record for our household. And that included time out after a knee surgery. So, when he wanted to try going off Florinef again, we gave him the OK. He tapered off, as you're supposed to, and has now been completely off it for several weeks and is doing very well.

So, is he completely recovered? I don't think that's ever an easy question. He's definitely got Joint Hypermobility Syndrome, and he thinks he still has some mild OI symptoms. He says he sometimes gets dizzy if he stands up too fast or doesn't stay hydrated. But otherwise, he seems quite well. The real test will be starting school in the fall - going to school full-time and playing soccer two hours a day - but so far, so good!

That's your dose of hope for today - some people DO recover and it is possible.

Finding Meaning From Suffering

My life tends to be super-busy and hectic, but I always try to take a few minutes to myself on Sunday mornings to watch an inspirational TED talk. The one I watched this week was wonderful, and I wanted to share it with all of you!

The speaker talks about taking the suffering in our lives and finding meaning from it and about how the difficult challenges we have faced helped to make us who we are. I found myself nodding along many times, laughing, and even crying at the end. We have to believe that these challenges we are facing will help to shape the meaning and joy in our lives. This has certainly been true for me already, and his words really touched me when I think about how much my older son has suffered. There's no doubt that it has already helped to shape who he is.



I hope you find this as inspiring as I did! Have a wonderful day, and be sure to take a few moments (at least) to appreciate the simple joys in your life.

Update on College Life with CFS

Oh, man...it's been ages since I've posted anything here AGAIN.  Sorry about that.  Even though the kids have been back to school, I have still been overloaded, battling a crash, plus a lot of running around because my younger son, Craig, hurt his knee (again) during the first week of soccer practice - doctor's appointments, MRI's, running medical records all over town, trips back and forth to school, etc.  Plus, my husband has been away for a week so I've had to get up at 6 am every day and do everything on my own.

Anyway, lots of you have been asking how Jamie is doing away at college (thank you for thinking of him!), so I thought I could maybe squeeze in a quick update.  Oops...time to get dinner ready...

OK, now that update...really...

So, Jamie has been in college for two weeks now, and things are going really, really well so far!  He is only taking three classes, and he says that is definitely helping.  He says cognitive functioning has been pretty good - perhaps some of his new supplements are helping (more on that complicated situation in another post).  Three days of the week, he only has one class, at 9 am, so he can rest for the rest of the day.  He has a single room, so he can still go to bed early - I think around 9 pm most nights (definitely NOT the norm for most college students!). 

Cool Gel Mat from Solutions catalog

The heat these first weeks has been a challenge for him because none of the freshman dorms are air-conditioned, and the buildings (and their electric systems) are so out-dated that personal a/c units are not allowed - students can't even have a fridge and microwave both running at the same time!  His dorm room is tiny, with just a small window and little breeze since it opens onto a courtyard.  He said his second week was made more bearable by the Cool Gelmat I ordered for him from Solutions catalog.  And, as of today, the temperature has finally cooled off here!  It's supposed to be highs only in the low 80's this week and lows in the 50's and 60's plus much drier!  That should help him a lot.

The high points?  He says the best things about college are the freedom and being near his friends all the time.  This poor kid has been practically chained to the couch for the past 18 months, mostly housebound and isolated.  Another benefit of going to college here in town (he's 20 minutes away) is that lots and lots of his friends are there, too - kids he's been friends with since preschool in some cases!  Best of all, his two closest friends - best friends since kindergarten - are there with him, each just one dorm building away.  So, he says, he loves being able to hang out with friends every day; even if he's not feeling well, he can spend a little time with friends in between resting, and he eats his meals with his friends every day.

For now, he is coming home at least once a week, on Sundays, so that I can refill his weekly medicine boxes (6 of them completely full!) and give him his B12 shot.  Last weekend, a 3-day holiday weekend here, his grandparents were visiting from out of town and it was incredibly hot and humid, so he slept here four nights in a row and spent a fair amount of time with us, but he still had the energy to drive back and forth to campus on Saturday and Sunday to spend some time with friends, too.  He was badly crashed on Monday and Tuesday (probably too much Frisbee with friends Saturday evening!), but he went back in time for his first class on Tuesday and says he felt better by Thursday morning.  This weekend, he only came home for a few hours today!  Just long enough to eat gluten-free pancakes, do laundry, let me refill his meds and give him his shot, and take a shower in his own private bathroom!

It is great to see him so happy and full of life after this long past year of suffering!!  It really feels like a miracle.  His stamina is still quite low, and we have a long school year ahead.  He says everyone in the dorms is already getting sick, so I sent him back with antibacterial wipes and hand sanitizer today!  Even in his very best years (and we are far from those), he still missed 25-30 days of school, usually in 1-2 week long crashes, so we know that is ahead.  But, he is making a good start and for now, he is happy and enjoying himself and being an almost-normal 18 year old, which is far more than we expected a few months ago!

Jamie (in gray) at home last weekend, enjoying a card game with us and his grandparents.

ME/CFS Groups on Facebook, Part 3

So, I heard some of you were still having trouble accessing some of the existing ME/CFS groups on Facebook that I included in my first post on the subject.  I think we have worked out the problems now!

People said they couldn't find the ME/CFS - Pacing with a Heart Rate Monitor group, so I worked with the administrator of the group, and he decided to change it from a Secret group to a Closed group (with the current members' agreement) - this will still protect the privacy of its members (posts are visible ONLY to members of the group) while making it possible for people to find the group.  So, if you are interested in joining the Heart Rate Monitor group, use this link - it should (hopefully!) work now to take you to the group's page - all you will see is the group's name.  Just click on the "request to join" button, and the administrator will add you to the group.

As for the ME Mums and Dads group (for parents who have ME/CFS), the administrator decided to keep the group classified as Secret which means it doesn't show up in searches (and apparently, the link I provided doesn't work).  So, here's what we'll do.  She made me another administrator for the group.  If you are a parent with ME/CFS who wants to join this group, e-mail me at jacksonde at comcast.net (I wrote it out that way to avoid getting spammed), and we will work together to help you find the group and get added to it.

So, hopefully, that will solve the problems - sorry for the inconvenience!

New Online Groups for Teens and Parents!

For weeks now, I've been meaning to set up a couple of new Facebook groups: one for teens with ME/CFS (and similar illnesses) and another for their parents.  I have really benefited from participating in other ME/CFS-related Facebook groups, but there didn't seem to be anything available for these two groups.  I finally did it this morning, after recent events made it feel urgent.

So, first the links and then some details:

Click here for Teens with ME/CFS and Related Illnesses (members are between ages 11 and mid-20's).

Click here for Parents of Kids and Teens with ME/CFS and Related Illnesses (open to parents of dependent adults, too, and the range of illnesses includes tick infections, EDS, POTS, and more).

Note that the Teens group is JUST for young people, and the Parents' group is ONLY for parents or other adult caregivers of young people.

I get e-mails and blog comments every single week from teens and from parents who are desperate to connect with others in the same situation, but they don't know anyone else in their local area.  In the past, I have addressed these notes individually, corresponding with people and trying to set them up so they can correspond with others.  But I can't do it all, and with Facebook groups, it is easy to find lots of other people in your same situation.

Many of you will remember that I set up a local group here in Delaware last year for kids and teens with ME/CFS and their families.  This local group (with families from NJ, PA, MD, DE, and even NY) has been a huge success, and we have all benefited by getting to know each other and having our own little support network.  Our families get together for casual picnics and gatherings, the kids have all become great friends, and the moms often get together for lunch. Our local/regional group, #MEAction Delaware, also has a Facebook group (at the link) and covers the whole region: DE, PA, NJ, MD.

A couple of weeks ago, when our older son was doing really badly, I sort of hit bottom emotionally and just felt like I couldn't take this any longer.  I was sitting in a medical facility with him, waiting (hours) for his IV, and I was ready to burst into tears.  I opened my laptop and thought, "Who can I talk to who will understand?" I didn't want to burden any of my healthy friends or family - it just makes them feel bad.  Then I realized I could reach out to our local group of moms.  I sent an e-mail, explaining how bad things had been and how I felt like I was losing it.  Within moments (literally), the nurse popped her head into our room and said, "Someone is here to see you - can I bring her back?"  It was one of the moms I'd just e-mailed!  She'd been in the grocery store next door when she saw my note on her phone and immediately came over to see us.  She brought me into the hall, gave me a big hug and let me cry, then ran back to the store to get our son some Gatorade.  In addition, within 10 minutes, I had e-mails from all the other moms, telling me they understood and offering all kinds of support.  I was totally blown away.  I want other parents to have this same kind of support.

As for teens, our son went to his Homecoming Dance last night at school.  He lasted only 2 hours and came home in tears.  He wrote this poem this morning and posted it on his regular Facebook page:

"How many times can I break till I shatter." -O.A.R

Trying to scream out the frustration swirling through my mind but I lack the energy.

My last high School Homecoming and

I'm trapped in my own body.

Oh how I wish to be free,

... the things I'd do

the person I'd be

If only I were free.

 And I realized that he needed the same kind of support, even when he's not able to get together physically with our local group.

SO!  I set up two new Facebook groups this morning, one for teens and one for parents.  Turns out it's pretty easy.  If you're not familiar with how these work, here's a quick overview:

You do have to join Facebook to participate, but most teens and many parents are already on there anyway.  Both new groups are Closed groups, which means that no one can read what's posted in the groups unless they are a member, postings will not appear in search engines, and I will approve the members.  Once you join a group, you can post on the wall, upload photos, share links - all the stuff you would normally do on Facebook, except that no one will see it except the members of the group.  You do not have to be "friends" with everyone else in the group - just being members of the same group allows you to participate.  This has been great for me because I limit my Facebook friends and my regular page to just family and close friends (otherwise, it's too much for me to keep up with), but I love to interact with other people with ME/CFS in various groups (see below).

So, once again, here are the new groups:

Click here for Teens with ME/CFS and Related Illnesses (members are between ages 11 and mid-20's).

Click here for Parents of Kids and Teens with ME/CFS and Related Illnesses (open to parents of dependent adults, too, and the range of illnesses includes tick infections, EDS, POTS, and more).

Note that the Teens group is JUST for young people, and the Parents' group is ONLY for parents or other adult caregivers of young people.

I specifically used the term Teens, but younger kids are OK (Facebook's official guidelines say you have to be 13 to join, but I know younger kids sometimes do - we let our youngest join at 12).  And slightly older is OK, too, especially for those still living at home who may feel younger than their actual age (I know how CFS can affect kids!)  

There is already an existing page on Facebook for ME/CFS for Young Adults (most members are ages 16 - 35) and the #MEAction page includes a group for #MEAction - 25 and Under.

The two new groups encompass not just those officially diagnosed with ME/CFS but also kids, teens, and young adults with related and similar illnesses, like OI, POTS, Lyme disease, fibromyalgia, and EDS.

There are other ME/CFS groups on Facebook that I joined and participate in regularly, including:

• ME Mums and Dads (that's for people who have ME/CFS and are parents to children of any age, even grown children, focused on the challenges of being a parent when sick)
• ME/CFS - Pacing with a Heart Monitor, a very valuable group for those using a heart rate monitor to try to avoid crashes; many members are also trying various OI treatments to reduce heart rate. There is sometimes a wait list to get in.
• The #MEAction Network lists over 100 groups on its page! There are groups by location, by occupation, by age, and all sorts of others - you can find a group that fits your needs, too.
• Myalgic Encephalomyelitis Global is a general information & support group for all ME/CFS patients, with a large, international membership.

So, please use the links above to join our new groups or some of the other groups on Facebook.  It's a great way to interact with other people who totally "get it."  Of course, please continue to read and comment on blogs, too! And you can follow THIS blog on Facebook - my Live with ME/CFS Facebook page has an active and supportive community on it.

Parenting a Child with ME/CFS

Is there any worse pain for a parent than seeing your child suffer?  It just tears your heart apart, especially when there is nothing you can do to help.

As you know, Jamie, our 17-year old son, has been going through a very difficult time lately, probably due to reactions from his Lyme and babesia treatment.  He missed the entire week of school last week.  He finally started to perk up a bit on Saturday and Sunday, enough that he was able to do some homework and even have friends over for a couple of hours each day.  So, he made it to school on Monday, but he came home feeling a bit worn out and with a headache.  By the time he came downstairs for dinner, he looked (and felt) terrible - severe headache, sore eyes, exhausted again, with awful joint pain and achiness.  By bedtime, he was just sobbing, finally releasing all his frustration and grief.  He said to us, "I'm missing out on everything!"

Our hearts just broke...again, as they have over and over during the past seven years.  We comforted him as best we could and helped him get ready for bed, but it all felt so useless.  It just feels so unfair that our wonderful son should have to suffer so much.  He's such a good kid (young adult, really) - kind and caring, loving life, a good and dedicated student. 

I do understand that we are fortunate in many respects - that medication has helped him so much in the past 5 years and allowed him to go to school, that his younger brother is doing so well, that we have each other and so many loving friends and family.  I also know that some of you reading this right now have kids in even worse shape, so believe me, I'm not complaining.  I just needed to express this grief I'm feeling, and you are the only ones who understand.  I can't share too much of this pain with friends and family.  It just makes people feel uncomfortable.

I believe wholeheartedly that things will get better, and we are taking many steps to try to help him improve and get through this difficult period.  That is my nature - to work toward improvement and to be optimistic for the future.  But it hurts so much right now.

He's doing a bit better this afternoon, still not able to go to school but certainly not as bad as he was last night.  No way around it but through it, right?

CFS Grief

It's been a long time since I've cried over CFS (yes, it does get better over time), but I cried this morning.  Not about myself but my son.  There is no worse experience in the world than seeing your child suffer and not being able to help him.

Jamie is no better, five days after his minor surgery.  In fact, he seems a bit worse, definitely in the grips of a severe crash.  Worse, this is not all due to his surgery this week.  He's been in terrible shape since about April, probably a reaction to his treatments for Lyme, bartonella, and babesia (tick-borne illnesses).

Whatever the causes, it is extremely difficult as parents to see him lie on the couch day after day while his friends run around being normal teenagers and getting ready for their senior year of high school.  My husband and I have been so upset these last few days, though of course, we try not to show it.

This kind of grieving is an integral part of living with chronic illness, but it never gets easier (less frequent, perhaps, but no less painful when it hits).

There is a very good chance that Jamie won't be able to attend school regularly this year, as he has for the past five years, since starting treatment for OI.  That is so painful to consider.  This is his senior year of high school; all we want is for him to be able to be a normal 17-year old.

We had to cancel our planned trip to visit my family this weekend.  We were supposed to attend my cousin's wedding tonight, a big family gathering tomorrow, and spend the day at a lake with my aunt and uncle and cousins on Sunday.  Instead, we're looking at yet another weekend spent in the family room.

OK, I'm trying to pull myself together and make the best of things.  Jamie and I have just started watching Ferris Bueller's Day Off on DVD - guaranteed laughs!

Taking Care of Me

At one point this week when I was feeling quite frazzled and worn out and worried about my newly diagnosed friend with MS, a dear and wise friend (you know who you are!) told me:

I hope you make certain to take good care of yourself - especially right now when your friend is going through so much turmoil....To help her best, you need to make sure you take care of yourself...This is a long haul process  (making it even more important for you to take care of yourself so that you can be there for the long haul).

Her words really hit home, and I took her excellent advice.  I stayed in that evening - by myself - and ate a simple egg dinner (I love eggs) and watched a wonderful, girl-y movie while lying on the couch.  It all felt so decadent, doing things just for me and not letting all the need-to-dos in my head escape and taunt me.  It was just what I needed, and I don't know why I can never seem to remember this simple advice when I am feeling so drained and wiped out.

I suppose some of the problem is simply being a woman - we just naturally feel as if we need to take care of everyone around us, and it's easy to forget our own needs.  And some of the problem is uniquely mine - despite all of the positive life lessons CFS has taught me (to slow down, to drop the perfectionism, etc.), I still tend to put a lot of pressure on myself to do everything and get everything done.  It seems I am destined to keep re-learning this lesson over and over and over again.

Overall, this has been a good week for me, a rejuvenating week with the kids away and Ken away much of the week as well.  It is truly amazing to me how easy it is to take care of a household of just one person!  I've only run the dishwasher once since Sunday and haven't done a single load of laundry all week.  The cleaning service was here a week ago, and the floor is still clean!  I went grocery shopping on Monday and was done in 10 minutes (astounding).  I found that cooking for myself only was so simple, and I tended to a lighter, more vegetarian diet (why buy a whole package of meat for one person?). 

Of course, as I do every year during this brief respite, I didn't get nearly as much done as I expected to.  For some reason, I assume being alone in the house will turn me into a productive hurricane of activity, somehow forgetting that my pace of life now doesn't leave much time or energy for actual work.  But, in the end, it turned out to be a nice balance between productivity and relaxing and between some much-needed social interaction and even-more-needed alone time.

And now this little pocket of quiet is coming to an end...just as I was getting the hang of it!  We will go to pick up the kids tomorrow, and life will return to its noisy, chaotic standard.  I'm sure the kids will be exhausted from their week with Gramie & Pop Pop, so I'm looking forward to relaxing with them on Sunday and enjoying some favorite shows together (the first season of Glee finally came in at the library - I can't wait!).

And this time, I swear I will remember to take care of myself.  No, really!  Well, if I forget, perhaps you can remind me.  And I will remind you - take care of yourself or you'll be no good to anyone else.  Enjoy the weekend!

13 Years Ago Today...

...our youngest son, Craig, was born!  And now we have two teenagers in the house.  It's hard to believe how fast thirteen years has gone by!

You're probably wondering how I'm doing after my big excursion out into the snow yesterday (I'm sure the suspense is killing you...). 

Well, I definitely did a little too much - big surprise!  I felt a bit crashed both last night and first thing this morning - not horrible, but tired and a bit achy.  But I took my medications after breakfast, including the beta-blockers, and within a couple of hours, I felt well enough to take a shower and...ready for this?...bake a pie for Craig's birthday!  Seriously.  Baking is usually something I can only manage on a really good day, but I managed fine today.  Both of our boys have been obsessed with banana cream pie lately, so I made a homemade black-bottomed banana cream pie - store-bought crust but still...

I'm a little tired now, but afternoons are always the worst time of day for me.  I feel like I'll be able to manage our dinner out tonight for Craig's birthday without a problem.  So far, so good...

Time to go whip the cream (too bad I won't be able to eat much of this dairy-heavy pie!).

Party for Chronically Ill Kids

That sounds like an oxymoron, doesn't it?  Or at the very least, like a really boring and possibly depressing event.  But all of those perceptions are wrong.

Our local CFS parents group got our families together again yesterday for our second gathering, and everyone had a great time!  One family hosted us for an informal potluck dinner; there were five families there, each with one or two kids/teens with CFS (I'm the only ill adult in the group).  We're all getting to know each other pretty well by now, so it was a lot of fun!

I was mentioning our group recently to a mom whose teen daughter has CFS, and she said she didn't really want her daughter interacting with other teens with CFS because she thought it would cause her to focus too much on her illness and might be depressing.  Nothing could be further from the truth!

Hanging out with other kids who have CFS is so freeing - they all became instant friends.  I don't think they talk about their illnesses or challenges at all when they're together - they talk and laugh and play games.  Best of all, they feel completely comfortable with each other.  They don't have to feel self-conscious or worry what the others will think if they have to sit down during Frisbee or lie down while playing video games.  There was dairy-free, gluten-free food available.  They understood why Jamie was constantly drinking Gatorade and why many of them attend school only part-time or not at all.  No explanations required.

For some of the kids who are usually isolated at home, this was the only time they've played outside in years and probably the only party they've been to in a long time, too.  The kids threw the Frisbee in the backyard and played video games in the basement.  One mom brought a bunch of flexible glow sticks, and after dark, the kids had a "glow stick war" in the basement.  True, some teens were lying down while they threw their glow sticks at each other, but the sounds of screams and laughter from the basement brought  a lot of smiles to parents' faces. 

And the connections formed aren't just fleeting.  After our first gathering in August, the kids all exchanged e-mails with each other.  In between our get-togethers, they're texting each other and interacting on Facebook.  They've formed solid relationships with each other and now know that they can rely on each other, that there is always someone available who understands.

Even though I'm the only adult in the group with CFS, I feel similarly comfortable with this group - they all understand why I can't stand much, why I'm constantly drinking water, why by 8 pm, I was exhausted.

I know I've said this here before, but if you have a chance to meet other people with CFS, you should try to do it, even if the exertion might result in a few days of rest afterward.  It's just so liberating to be with other people who instantly "get it," who require no explanation.  Just as all of you that I've met online have enriched my life and made me feel less isolated, meeting all these other families dealing with CFS has made all of us feel less alone.  Our focus has been on social events (which has been great!), but along the way, we're also providing support for each other.  It takes a village, right?

On the way home last night, Jamie said, "I wish we could do that every week!"

Craig has a 504 Plan!!

Sorry I haven't posted much this week.  Ken was out of town for most of it, so I've been on double-duty, including the early shift, getting up at 6 am each morning, with hectic evenings of running the boys around.  I am wiped out, exhausted, pooped...uh, so tired I can't even think of more words for it.

But I wanted to share some very good - and much overdue - news.  After 4 years of struggling, we finally got approval this morning for Craig, our 12-year old, to have a 504 Plan at school.  For those of you unfamiliar with US school issues, this is an official document, backed by the Americans with Disabilities Act, that spells out accommodations the school will make to help Craig deal with the effects of his illness at school.

We requested one for Craig four years ago, in 3rd grade, when Craig was first diagnosed with CFS and OI.  Even though he missed more than 30 days of school that year, the school's 504 committee (consisting of several people who didn't even know Craig) said that he wasn't eligible for a 504 because he got good grades...so therefore, his illness obviously didn't affect his education.  We fought this decision, pointing out that CFS is unpredictable, that Craig was doing well only because his current teacher was helping him after his absences, that we needed something official in place to ensure future teachers would cooperate, and that his older brother, affected the same way by the same illness, had had a 504 plan in place since 5th grade (at other schools in the district)...but to no avail.

The guidance counselor (and 504 Coordinator) at Craig's school also happens to be the mother of one of Craig's friends, and she's always been very supportive of him.  The school has a new principal this year, so we were even more nervous that our previous "hand-shake agreement" wouldn't necessarily be upheld, so the counselor suggested we give it another try.  At 7:50 this morning (yes, another early morning!), Ken and I met with the new principal, a 504 coordinator, the school nurse, and Craig's current teachers.

This time, things were different!  I brought a list of the basic accommodations that are in Jamie's 504 and that we were requesting for Craig, I pointed out that we were already doing all of these things, but informally, by e-mailing the teachers each year and requesting their help.  Craig's teachers were incredibly supportive!  When the old argument came up that he was getting good grades, his social studies teacher said, "Yes, but that's WITH these accommodations in place.  That's the point - they should be formalized."  His math teacher spoke up and said she had taught Jamie in 7th grade, with the exact same 504 Plan, that it worked well, and that Ken and I were very supportive parents who would never abuse the accommodations (see why she was one of Jamie's favorites?).  The new principal voiced his support, too.

In the end, every single person at the meeting agreed that he should have a 504 Plan, and the meeting coordinator said she'd use the list we'd written and have one for us to sign within a week. 

Even though Craig is doing very well for a kid with CFS, thanks to Florinef, having this document in place gives us peace of mind that when the unpredictable happens (as it always does with CFS!), Craig will be backed up by an official document and the federal law.  If we get another loser teacher like he had in 5th grade, who doesn't want to help Crag after his absences, there will enforcement behind the Plan, not just Ken and I saying, "you need to do this."  And when Craig moves on to high school in a couple of years, these accommodations will already be in place to help ease the transition to a new school.  Peace of mind!  We are very excited.

Well, this post is already too long, and I still feel rotten (killer headache, too - I wish this storm would hurry up and come through).  Tomorrow, I'll post the list of accommodations, plus additional ones we've used in he past, to help give parents an idea of what kind of help is available, if you know what to ask for.