Going from Caretaker to Patient

It was all very normal and typical. My husband had a full time job and I had a part time job while finishing my degree. We traveled all over the southern half of the USA. We even traveled internationally. We lived life to the fullest. Then in 2003 my husband became increasingly and alarming debilitated. We ran the gambit of doctors looking for answers. We saw Internists, Pulmonologist, Gastroenterologists, Endocrinologists, Immunologists, Oncologists, Cardiologists, Neuropsycologist, and finally we received the diagnosis we had by this time figured out. My husband had CFS/ME. We then went to see a specialist. The specialist told us that he "had one of the most severe case she had ever seen." Treatment was tweaked and we learned what our new normal was going to be.

While the gambit of doctors was being run. I saw my husband struggle with the day to day tasks we all take for granted. Walking to the kitchen, showering, sleeping, paying bills, and cooking for himself. Forget trying to go skiing, play volleyball, racquetball, and dancing. All the activities my husband loved where all snatched away from him. He now had to settle for just getting out of bed and being able to run and errand with me. He like so many CFS/ME patients was unable to work anymore. He was a reservist who got called back. It was while on active duty he came down with this illness. It took a very long time for him to be discharged from the military correctly and receive pay. We lost everything we had worked our whole lives for. We spent a long time grieving for the things we lost like our home, his job, my job that I had to quit to take care of him, and many friends who couldn't understand why we couldn't just go out to a movie anymore. I cried many days seeing my once outgoing, fearless husband come to terms with being forced onto a new path in life. I watched his dreams of going into space slip away. These where our darkest days.

This horrible illness did one thing for us. We grew stronger and closer in our relationship. We educated ourselves on CFS/ME to the point where I can now bring forth new treatment ideas to our doctors and have them try them on us. I learned how to cut threw government red tape and to NEVER give in or loose hope. I became as my husband called me his portable "brain" and "advocate". We had two sons. Since we are both home we are able to spend more time with them while they are young. These precious children keep my husband and I going.

After my second son was born I became increasing ill with strange symptoms. Symptoms eerily similar to my hubbies. I tried to claim it was all pregnancy related. After a year of more muscle fatigue, joint pain, random increased anxiety, and insomnia I knew in my heart what I was dealing with. My hubby knew before me. Together we ran the gambit of doctors but this time I was the one lying on those hard exam tables with the paper covers. I was no stranger to exams and testing. I had two previous back surgeries due to being born with a benign tumor on my spine. These tests where scarier. I was a new Mom. How would I handle two small active toddlers? How would this disease effect my body and ability to function? Most of all could our son get this. This summer I received my official diagnosis. Now we are two CFS/ME parents trying to figure out how to keep up with our very healthy children. :).

You would think with my husband having this illness for 9 years now that I would know all the things I should be doing. Wrong! He tells me things to do but CFS effects me a bit differently so I am in that beginning learning curve. I try to find that invisible line we all have that says, "Pass me and you will be down for days." With two young children being a Mommy doesn't stop. So I push myself every day. Together the hubby and I are figuring out a schedule that works for us as parents. Also, through the help of one very loyal and loving friend we do have backup whenever we need it.

I thank you for those who read my personal story. I will attempt to post more on dealing with CFS/ME as a wife, caretaker, patient, and Mom. I would love to hear from other parents who have children and how they cope. I would also love to hear more tips on things to Do and Not Do as a newbie. :)

My Most Sincere Wishes for 2013 to bring better treatment, better understanding, and more research for this disease. Happy New Years Everyone!


Here are three tips for a newbie:

1. Listen to your body. I'm sure I'll never get it exactly right but over time I have figured out (mostly) how much I can do from day to day based on how I'm feeling. When in doubt, do less.

2. That "invisible line" moves, at least for me. Don't expect that you can do the same amount that you did yesterday, or the day before, etc. Take it day by day, hour by hour, moment by moment. And try to do a lot of pre-emptive resting (resting before you start to get symptoms).

3. Try to live in the now. When I project my current situation into the future (how am I going to survive this illness for the next 5/10/20/30 years????) then I start to feel overwhelmed. I have to make myself think in terms of what are my current symptoms at the moment, what do I need to do right now (rest? eat? make a list? complete some task?), what can I do today, and so on.

One suggestion is to look into Orthostatic Intolerance symptoms (http://www.cfids.org/about-cfids/orthostatic-intolerance.asp ) and see whether this applies to you. I suggest this mostly because you said that you and your husband have some differences in symptoms and this might be one reason why (different subset). There are other ME/CFS subsets but I don't know as much about them.

I hope this helps a bit and was not too long. Best of luck to you and your husband!
Your story was very moving. Im sorry that this has happened to your family.

I believe I gave ME to my sister... she drank out of my glass by accident one day and then ended up with this illness too, she's now been ill as well for the past 2 years while I got this illness 15 years ago. I used to have a boyfriend who was several times made sick (flu like symptoms) after I kissed him.. fortunately whatever this illness is, his system could fight it off. We ended up having to have a non kissing relationship so he didnt end up catching whatever it is from me again.

I also have 2 cousins who I believe also have this but are undiagnosed thou both are on disability payments due to their illness.. one of those was only 17 years when she first got sick. Like yourself.. I fear that my daughters (adults now) or my little grandchildren, may end up being the next generations to get this illness. Being sons.. probably puts your children at slightly less risk then daughters. (one ME/CFS specialist has observed that this illness will appear in 25% of our children).

I pray for the day when the cases in which this seem to be transmissionable are actually investigated as there is certainly a CFS subgroup (ME) which seems to be.

Like you and your husband.. me and my sister have manifested this illness in different ways with one of my cousins manifesting it like me..while the other cousin is differently again.

I wish the best for your family
Hi Devi, thank you for sharing this with us. As Tania said - a very moving story. I have had M.E for nearly 18 years (to varying degrees - i even had a long remission) and am now more or less housebound and struggling to get out of the moderate catgeory (was mod/severe for 3 years recently) i also have 4 children and a granddaughter. While i have been ill my eldest two children have left home - dealing with two is much easier than 4 no matter their ages! My eldest daughter was also ill at 15 with an undiagnosed illness that left her bedbound for months and unable to attend school - i was trying to care for her while being at my most severe. Definately tough times. She is much better now and at 19 able to work part time (with lots of rest) she missed out at college due to illness and hasnt achieved what she wanted to, but she can have a good life now and has friends, a boyfriend and a social life.

Being a mum when you are ill is tough - like you say, being a mum never ends, you cant swithc it off and on. My best advice to any newbie is rest rest rest as much as you can. Take any help on offer (i have my groceries delivered by the store tot ake the pressure off my husband who has to do a lot else and works full time at 3 jobs)

My most helpful things have been pacing, rest, B12 injections, magnesium, selenium, vit c, vit d3 and herbs to support the immune system as well as calming herbs for CNS.

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