Sunday, July 13, 2014

Being Sick, Well

If you have been reading anything about me or my condition in any form or fashion for the next 3 or 4 weeks, you will know that this chronically ill gal, has been very ill, even more ill than my normal chronic illness ill feelings. 

I have been almost passing out, profusely sweating, and tremoring every time I stand up even if it's just like for 30 seconds or more. I've been having worsening vision issues to the point where it is very scary to drive long distances and on main roads because I don't trust myself. My vision is super blurry and I can't read anything up close and far away is getting worse.  This is majorly concerning since I start back to school next month, and that's a lot of reading involved. And I've been having weird GI issues. For the past, 8 months I've had to use lots of laxatives to make me go to the bathroom...and now it seems like I don't have to do anything and it happens many, many times a day. And I can't control it. And it happens NOW, not in 3 minutes it takes to get to the bathroom. NOW. I basically can't go outside at all because it's too hot and that just makes my symptoms magnify so much more and I get even more miserable. I'm still trying to get to most appointments. But I am even canceling many appointments because I just don't feel well enough to get out of bed and drive across town. I am just plain and simple sick.

In addition to just being plain sick. I am still trying to maintain my friendships (on Facebook and in person) but it is super hard because I am so exhausted. And I am doing the data collection for my thesis. And that just takes up all my energy right there and it makes me insanely  exhausted on top of everything else. I have *never* felt this sick before as I have felt the past 3 or 4 weeks. But yet, people are still telling me I'm an "inspiration" and how awesome I am at "being sick" and how I am so good at "managing everything"...and I generally laugh at them as I am reading other people's posts in groups and crying in the background because I'm identifying with every post of hurt and shame while I'm getting PM's of how inspirational and strong I am. Don't get me wrong. I like the fact that you think I'm inspirational, and strong, and manage things well, and am good at being sick. But I'm not. Really. I've just come across several coping mechanisms that I use as my mantra, as my rules, my guidelines really...of how to be sick, well. I'm going to share them with you now too, so hopefully you can learn to "be sick, well" as well. So in no particular order here we go.

1) Have an attitude for successful coping. This does not mean you have to have a positive attitude while you have pain or are exhausted. But there are certain attitudes that those who cope with chronic illnesses would do well to maintain at all times, such as: live for today, one day at a time, not in the past or the future, treat problems as challenges to overcome, accepts you illness and reject "why me" questioning,  

2) Daily Living Tips: Be organized and set realistic goals and prioritize activities so you can cope well daily. Decide what is most important and what can slide. Live your life as fully as possible. Seek help from others when you feel you can't cope, allow flexibility and extra time in your plans, take tasks that require concentration more slowly, get medicines and routines organized and written down, get your most difficult tasks down at the time of day you feel best, realize you may have different abilities one day than you did another day. Learn to listen to your body. Stop and rest as soon as you begin to feel tired and don't do too much just because you start to feel better. 

3) Relationships: For successful relationships during chronic illnesses you need to ask for what you need and be specific. You may feel like a burden on others, but if friends and family offer to give you a break and take some of the pressure off of you in some way, take them up on it. Gen help from all possible resources, educate your friends and family about your illness(es), and try to enjoy being around other people as often as possible. 

4) Develop positive self- talk that can help you overcome your negative thoughts. Some of these self-talk phrases to keep your attitude positive are: don't blame anyone for your illness, judge success as taking care of yourself well, enjoy small pleasures when you see them, know that you are not defined by your illness (or by what you can or cannot do), remember that your value and worth have not declined because of your illness.

5) Understand your chronic illness- make sure that you are well versed on your condition. All the causes, symptoms, wonky things it does to your body, treatments, all the things like that. The problem with having these chronic, invisible, rare illnesses is that the doctors aren't as well versed in them so we have to be on top of the research ourselves so that we can keep the doctors on track and make sure they are helping us and giving us the right treatments. And just so we are aware of what might be going on in our bodies so we don't freak out when it starts happening because we are aware of what could happen. Make sure you have ALL the information about your chronic illnesses so you can be educated about what is to be expected.

6) Consult with a doctor after identifying your main symptoms that are unusual. If there is something going on that is out of your typical chronic illness symptom feelings, make sure you contact your doctor. You could be what I call "real person sick" with a virus or other type of infection. It's so hard to tell when you are chronically ill if you are sick or if it's just your illness because you are so used to having so many symptoms all at the same time. Make your doctor a partner in your care, but you should be the main voice and determining factor, you're in your body and know how to feel, not them.

7) Manage your team of service providers: You need to be your own best advocate and make sure that all your doctors are on the same page with each other.These days your lucky if your specialists even send a report back to your Primary Care Physician (PCP). They definitely don't send reports back to your other 5-10 specialists. So there is no way for everyone to be on the same page, unless you make sure you take good notes or record the appointments so that you can tell your other specialists what the previous specialist said so they can be on the same page. You need to coordinate your care yourself since the specialists don't know how to do it for you.

8) Use complementary alternative therapies, that's what they are there for. Don't just use medications and hope all your symptoms will go  away because we all know meds don't work 100%, even if they do take the edge off somewhat. Consider using, in addition to pharmaceutical prescription, massage, pool therapy, physiotherapy, intravenous therapy, counseling, following good nutrition habits, and following your spiritual path to get healing feelings from your spiritual path as well.

9) Create an oasis in your home: Make sure these areas in your home are made safe: floors, walls, windows, furniture, closets, the bed, bed linens, pillows, laundry methods, personal habits, filtration system, ventilation system, general maintenance. For me, when I found out I would be moving to the back half of the house which is a rather large space and basically like a little apartment, I spent a lot of money, time, and energy making my room a very relaxing, soothing place to be because I knew I would be spending so much time in bed. I am so happy in my room, and my friends that come over always comment about how relaxing my room is too.

10) Make sure your whole family is involved and knows what is going on, what the names of your diseases are, what the possible symptoms are, a basic overview of what meds you're on (or at least how to find a list) in case you are unconscious or something and have to go in the ambulance. Things to watch for, etc. Things you may need to watch for and things you might need to be aware of for things I (or you) may not be able to do anymore.

12) Make a healthy investment in your self (stop smoking, drinking, start exercising more, etc). Those who made healthy investments in themselves statistically had better symptom control of their chronic illness than ones who didn't. Plus, if you make a healthy investment in yourself, you aren't only possibly improving your symptoms for your chronic illness but you are also making some other aspect of your life improved as well. :)

13) Manage your medications. Remembering to take one pill a day is tough; managing 10 or more is daunting. Knowing about the drugs you take — why you take them, how best to take them, and what problems to watch out for — is as important as learning about your condition. Merely reading a book about prescription drugs sometimes prompts more worries than it allays. Talking with your doctor, nurse, or a pharmacist can put drug information into perspective. I have such a routine down with my meds know that I don't even have to think about which syringes I need, which bottles need to fill which kind of syringe to what line, and all that. They are always in the same order. I barely have to look to pull up my meds now. Neither of the 5 times a day I take them.

14) Reach out. Doctors, nurses, and other health care professionals aren’t always the best reservoir for information about what it’s like to recover from open-heart surgery or live with heart failure. To get the real scoop, look for a support group in your area and talk with people who have been through what you are facing. The support groups I'm in on Facebook, and the relationships I've developed with some of the people in them are some of the best friendships and relationships I have developed on my chronic illness journey. There is just something so special about someone being able to say, "what, me too!" when dealing with such crazy circumstances. 

15) Plan for end-of-life decisions. If the diagnosis of a chronic condition, or life with one, has you thinking about death, channel those thoughts to the kind of care you want at the end of your life. Spelling out whether you want the most aggressive care until the very end, or whether you’d prefer hospice care and a do-not-resuscitate order, can save you and your loved ones a lot of confusion and anguish later on.

16) Recognize your limits--When living with any kind of chronic condition, it's important to recognize your limits. It can be tempting to push yourself too hard, especially in a society that praises those who push past the outer limits of endurance, but doing so usually results in more pain, fatigue, and limitation down the road. **This is one of the things that I struggle with, by far, the most. I have had so few 'good' days lately that when i have one, I do everything in one day and it results in the next 2 days. Learn to conserve your energy and recognize your limits, so that you are able to enjoy the tasks you are able to do.

17) Learn your body--Every chronic illness patient is different, and what works for one might not work for another. Keep track of activities that lead to increased pain or fatigue, as well as activities that help rejuvenate and relax you. Identify any triggers — such as food, environment, or poor sleeping habits — that cause your symptoms to worsen, and try to avoid them. Learning which things help or hurt you, personally, can help lead to more effective management of your chronic condition — and a happier, more fulfilling life.

18) Remember that even insensitive comments come from a place of love--When you're living with an invisible illness, it’s hard not to feel bombarded by ignorant and insensitive comments. “But you don’t look sick,” people will often say. Some may try to convince you that it's “all in your head” or that you’re just not “trying hard enough." Frequently, friends and family may load you with vitamins, supplements, and other “miracle cures," or encourage you to push yourself harder and forget your pain or fatigue. It's important to remember that, even the most insensitive-sounding comments are coming from a place of love and caring. Usually, it's difficult for friends and family members to understand just what goes on in the life of a chronically ill person, and they're trying to reach out and show their love in the best way they can. When you find yourself on the receiving end of an ignorant or insensitive comment from someone you love, try to accept it in the spirit it was intended, then move on. Remember that only you can know what is best for your lifestyle, and only you can understand your own limitations. Be honest with those around you

19) Frustration with living with a chronic illness--It can be frustrating when others don't understand what you're going through. When you have an invisible illness, often that's the case. Because others don't see the time and effort that goes into accomplishing even the smallest of tasks, they may focus on the fact that you look normal.While it can be tempting to always put on your best face when around others, it's important to be honest about what you’re experiencing. In a gentle and loving way, try to help those around you understand what you’re facing. If appropriate, explain how pain or fatigue makes your daily life difficult, or describe how everyday tasks such as household chores can become too much for you to handle. Invite friends and family to ask questions in order to better understand your condition. It’s OK to have conflicting feelings When you struggle with chronic illness, sometimes, it can feel like you're at war with yourself. Like everyone, you want to look good and seem “normal.” At the same time, it's frustrating when others don’t understand your limitations. You may feel caught between the need to “prove” to others that you’re really sick, and the desire to present your best self to the world. It's OK to feel conflicted. Navigating life with an invisible illness is tricky, and the desire to look normal along with the desire for your illness to be taken seriously are natural. Be gentle with yourself, and don’t forget to have a little extra compassion for yourself and those around you. 

20) Live your life fully, regardless--Although living with an invisible illness or disability poses many unique challenges, it's still possible to have a wonderful and rewarding life, in spite of pain and fatigue. Always remember to honor your limits, learn what works for you, and be patient with yourself and others.As difficult as it may be, an invisible illness doesn't have to stop you from living a life filled with happiness and satisfaction. Let go of expectations, Find supportive friends, search for the joy in the blessings, use your talents and skills for things you care about, encourage someone else.

21) Take care of yourself first.-- Because we're brought up to bear the children who will start out life completely dependent on us, this is especially hard for women. I’ve learned that if I want a balanced, productive life, I need to offer care, compassion and respect to myself first. This is what allows me to care for others.

22)Never, never, never give up--Getting a diagnosis for a poorly understood chronic illness can take years. Many patients give up and settle for a life of bitterness or magical thinking about miracle cures. Disability and medical insurers play on the sick by denying legitimate claims, in the hopes that weary patients will give up their appeals. My experience has been that a determination to access comprehensive and compassionate care, and to receive the benefits to which I am entitled are causes worth fighting for.

23) Be honest about how you're feeling--People can’t read my mind. Just because they don’t understand doesn't mean they don’t care. I find that if I'm honest and straightforward about my condition and my limitations, without whining or complaining, people are generally very willing to be patient and accommodating toward me.

24) Enroll in the School of Whatever Works--In managing my health needs, I've utilized and benefited from drug therapies, surgery, dietary changes, physical therapy and exercise coaching, acupuncture, massage therapy, herbal supplements, homeopathy, enforced daily rest and more. As soon as I think I have it all figured out, my symptoms change and I have to enroll all over again in the School of Whatever Works.

25)Make friends with fatigue.--I rest in bed for several hours every day. This proactive habit prevents the complete collapse that comes from wearing myself out. Instead of fighting the fatigue, I’ve learned to embrace and cherish my rest period, including that little snack and drink I loved in kindergarten.

26) Live as a child--Kids tell the truth, ask for help when they need it, freely give and receive hugs, laugh easily, fall asleep when they’re tired and cry when it hurts. I try to follow their excellent example.

27) Step out of the box--To live fully, I occasionally need to push the limits and step out of my little sick box. Whether it is through travel, volunteering, or learning something brand new, stepping out helps me feel more fully alive and learn new things about myself.

28) Search for silver linings--I believe all of life’s experiences contain value, even the ones that seem bad. Being sick has taught me to be a more kind and sympathetic person, to set reasonable boundaries, to release negative people from my life and to appreciate the beauty in the present moment. These are not small rewards for searching for those silver linings.

29) Find a way to share your gifts--I’ve come to believe that the reason we're here on Earth is to discover, develop and give our gifts. Illness did not exempt me from that purpose and obligation. I could no longer give the gifts I had been trained to give, but I could, and did, learn some new ones.

30)Be still.--I am still for a time each day because I must be. I've grown to love the quiet and peace that abides in the stillness. Learning to be still has improved my health, enriched my intellect and opened a spiritual center that used to be swamped by the noise of living. 

So, anyway, these are just my 30 tips on how to be sick, well. Meaning 30 ways to cope with being sick with a chronic or terminal or whatever type of illness and still feel good about yourself. These tips will help you life a more fulfilling life, even though you are sick. And will help you maybe come up with some of your own tips for being sick, well (being good at being sick). Anybody else got some other ideas. Sometimes we just have to hold on for dear life and  wait for things to change by waiting for the way the wind blows to change. Sometimes we have to rely on others more than others. But we always need to know how to be sick, well. Because being sick, badly...just really isn't any fun, now is it? 

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