Adjusting to Serious Illness

This is an excellent article from CFIDS & Fibromyalgia Self-Help. It is not easy to live with chronic illness, whether you’re the patient, the caregiver, friend or family member. Included in this article are ten practical ways that patients and their families can use to make their households and relationships work better.

Adjusting to Serious Illness:
Strategies for Patients and Their Families

By Bruce Campbell

CFS and fibromyalgia force profound adjustments, both for patients and for those around them. Household tasks are juggled, finances are often strained, and all family members wonder what the future will bring. What strategies will help you and your family adjust if you are struggling with the disruptions created by CFS or FM?

Understanding Your Unique Situation

The foundation of an effective response is understanding your unique situation. Every family’s circumstances are different. Just as each patient must individualize his or her self-management strategy, families need to develop a response to CFS or FM that fits their individual circumstances.

The scope of adjustments will be dictated by the seriousness of the patient’s health problems. CFS and fibromyalgia vary greatly in severity. The average person in our self-help program reports that she functions at about 25% of normal, but there are sizeable numbers who are housebound, while others are less affected and continue to work part time or full time. The severity of medical issues will set the limits on the amount of adjustment required.

The family’s financial situation is also crucial. Some families can afford to let the ill person stop working or have her take an early retirement, while others are stretched financially and may be forced to make financial adjustments of various kinds. The presence or absence of children and, if present, their ages is significant. Couples with school-age children have to juggle work and child care. Those with adult children may get help from their kids. The health of the spouse is another important factor. In some families, both spouses are ill or a normally-healthy spouse has a health emergency like a heart attack or surgery.

A final factor is the strength of the bond between the partners. Some marriages are made stronger by illness, while others become frayed and still others break. The response of the well spouse to illness may vary from strong support, on the one hand, to disbelief, abuse and abandonment on the other. Some people in our groups, who have had multiple marriages report that they have experienced the full range of possible responses, most commonly a lack of support in an initial relationship and understanding in a later one.

Ten Strategies

Here are ten ideas for how families can adapt to CFS or FM.

SeriousIllness10Strategies

Read the rest here

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Fibromyalgia Awareness Day 2015

FMS---Collage Today is Fibromyalgia Awareness Day.  How do you like my shades-of-purple manicure to honor the occasion? And I just happened to be wearing that t-shirt on the same day I had my nails done. I think that was the inspiration for the purple mani. After all, a girl needs to have a little fun once in a while, even if she happens to be feeling yucky. Not surprisingly, my personal theme for 2015 Fibromyalgia Awareness Day just happens to be “Think Purple!” The chart below is a real eye opener and may help you understand the complexity and far-reaching effects of Fibromyalgia. Top 10 Fibromyalgia Facts You Need to Know Today from the Fibromyalgia Support page on Facebook:   I am ever thankful for my Savior and Lord Jesus Christ who helps me get through every single day. Praise be to His holy and precious name!

Give thanks to the Lord, for he is good;     his love endures forever. —Psalm 106:1

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My Hair Hurts!

I couldn’t believe it when I found this image at A New Kind of Normal. Jamee lives with multiple chronic illnesses so she understands the sentiment in this image.

I can’t tell you how often I have said that my hair hurts, or have had to change clothes because seams and tags cause extreme itchiness and sometimes even pain. I have cut the tags out of most of my clothing and am thankful for the companies which are now imprinting clothing with the information in lieu of a tag.

These are just a couple of my symptoms of my Fibromyalgia Syndrome (FMS) and Chronic Fatigue Immune Dysfunction Syndrome (CFIDS). Oh, and let’s not forget the chronic migraines that are liberally sprinkled in with everything else.

Next week is National Invisible Chronic Illness Awareness Week. Please check out the Invisible Disabilities site to find out more about what’s going on next week, or just to learn more about chronic illnesses that seem invisible to others but are very real to those of us who struggle with one or multiple of these illnesses every single day.

Apparently this flareup I’ve been going through has affected me more than I realized because I thought I had already composed this post and scheduled it for today but I had only started it, typing in only a few lines before laying it aside several weeks ago. But that’s the way my body works in these “new normal” days. As I type this, I am struggling for each word so I guess it’s time to stop typing and publish this.

Before I go, though, I want to keep it real by saying that throughout my many struggles with these chronic illnesses, I have many days where despair threatens to take over. Sometimes it does. But most times I can think clearly enough to remember that I have a Hope that doesn’t quit and never fails me:

But those who hope in the Lord will renew their strength.
They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint. —Isaiah 40:31

Beloved, no matter what you’re going through, hold on tight to that Hope! One day all pain and suffering will be erased for those who believe in the mighty and saving power of the Hope of the world: our Lord Jesus Christ! Those who trust in His saving grace will be able to live pain-free for eternity. The physical pain we feel now is nothing compared to the extreme joy we will experience in our heavenly homes.

To find out more about the saving power of Jesus Christ, please read this or contact me. I would be so happy to answer your questions!

In His powerful and comforting grip,

Thankful Thursday

I woke up with my usual migraine plus allover aches because of the weather, so I have to admit I’ve been struggling with this today. I’ve designated Thursdays as “thankful” days but I woke up feeling so yucky it was almost impossible to think clearly, let alone come up with something to be thankful for today. But… God is always faithful and because I asked, He brought these to mind (in no particular order):

  • a warm home
  • my loving and lovable hubby
  • C O F F E E !
  • close friends who will be coming over for coffee a little later
  • my Savior and Lord Jesus Christ
  • my two grown children
  • a good hair day
  • Christmas music

Now to try to make this day count for something…

Crash and burn

It has been a very busy week for me and I’m grateful I was able to do everything I did, but… now I’m going through the crash and burn phase — what I call my payback days. Living with multiple chronic illnesses is no picnic. It’s very discouraging to look around the house and see everything that needs doing but only being able to do the minimum to keep up. I try hard not to think back on how much I used to be able to do, seemingly simple things like cleaning my whole house in one morning.

Those days are long gone.

Now I can only do one thing, such as dusting one room, and then have to stop and rest for awhile before doing anything else. And quite often, dusting that one room is the only task I am able to accomplish that day.

Take something as enjoyable as having company. Rick and I have friends over for coffee on Thursday mornings, and I love my time with these close friends whom we call “family.” But when everyone leaves, I suddenly realize I am wiped out! If the migraine I woke up with hasn’t completely left me, then it feels horrible by that point because of all the talking and laughing during that sweet fellowship. I wonder if that’s what the phrase “hurts so good” means — well, maybe not.

To this “get it all done now” turned “maybe tomorrow” person, it has been a slow process. From denial to frustration to understanding and finally to acceptance, this journey has not been easy. However, I’ve learned some things that work for me:

  1. Accept what you can do and don’t worry about the rest — it will eventually get done.
  2. Make yourself rest often, even if you don’t think you need it at the time. If you’re like me, your mind wants you to keep on going (like that Energizer bunny) even when your body tells you to stop.
  3. Enlist help from your spouse and children for tasks that are too difficult or time-consuming for your energy levels.
  4. Find things to do that you enjoy but won’t add to your pain burden. I can still write, something that fills me with joy, but I’ve learned I have to pace myself  because I could easily go on for hours! I have also discovered how much I enjoy crocheting, especially for others. This keeps me busy, makes me feel productive, and moves the focus from me and my pain to whomever I’m crocheting for at the time. And I have always loved to read and lose myself in a good book.
  5. Be thankful for what you are still able to do, even if it is something as simple as making coffee.

Every so often when I do get out with Rick for coffee or a meal out or to get together with friends, someone will ask how I’m doing that day. My response? “I’m here!” I think that short and sweet statement says it all.