How not to lose Yourself to Your Illness

Tips on how to feel less like a patient

Besides all the other inconveniences of chronic illness that are difficult to deal with, what can often be most difficult is always being a patient and feeling like you are losing yourself to your illness. It is often times quite a helpless feeling as things you could once do with ease are stripped away from you. It is vitally important to your well being that you hold on to yourself as much as possible and find ways that help you fell more like you. I don’t have any hard and fast tips, because I think this a personal sort journey. We all have different likes and dislikes different hobbies and different things that make us smile. Still, I have done my best to come up with a few things that I think everyone will understand across the board and will help point you in the right direction.

Family
Remember that family deals with your illness too and probably mourn the loss of who you were prior to illness too. But instead of isolating yourself and feeling ashamed of who you are, reach out. You need your family, you need their love and their support and you need to remember that you are still the same person inside. It may take some patience and ingenuity to do the things you once did or enjoyed as a family, but it can be done.

Friends
The same goes for friends. Do your best to keep them close. Share with them activities that you might be able to enjoy even when you might be tired or in pain. Having options helps because many times friends feel as lost as we do and they know much less about their illness.

Work
Much of our self esteem is tied to what we do outside home and family. If you can still work i would encourage you to do so, even if on a part time or limited basis. If you can’t and many of us can’t, find something to do that gives you a sense of purpose and also keeps you busy. I started this blog as a way to give me purpose, maybe help some people along the way and to spread awareness about chronic illness. I also do what I can to support some of my favorite organizations from my computer. It keeps me busy and helps me to continue feeling useful and I think that is extremely important to our mental health.

Celebrate the Small Things
All your accomplishments. Realize that in times past you may not have celebrated certain events, thinking them insignificant, but now they mean a great deal more. We fight very hard for every small victory, so don’t let that go without acknowledgment. It doesn’t have to be a big celebration but recognize it and mark it with a friend or family or even just a treat for yourself. You need a reason to smile, so make one.

Self Motivate
Something I learned struggling with bipolar disorder, is that those days or weeks that I struggled with depression, I could have had my own cheer squad and often times did, with family trying to cheer me up but it didn’t do one damn bit of difference. sure, it helped sometimes but what got me through was digging deep and reminding myself those reasons to live. Be your own cheer leader. Remind yourself of those reasons not to get caught in the muck and sadness of your illness. Use post-it notes to remind yourself of each and every reason: Husband, wife, kids, dog, cat, mom and dad, friends. Every reason should be a silver lining. Why? Because you are loved and you are worth being happy. I am not saying that post-it notes suddenly changed my world, but it was a reminder of why I needed to try.

Dreams
That being said about self motivation, don’t give up on your dreams. Chronic illness may make things more difficult and challenging, but if you give up you are giving up on yourself. You must force yourself to change and adapt. Research ways you can reach your goals or redefine your goals. I live by this mantra: Face it. Embrace it. Defy it. Conquer it.

Breath of Fresh Air
Go for a walk if you can, or sit in a chair and just enjoy the beautiful day and the sunshine. Maybe look at the changing autumn leaves, and breathe in the crisp scent of leaves. Sometimes just changing your setting can improve mood and make you more relaxed especially after waiting in a doctor’s office.

Take a Break
Stop the all-consuming focus around your illness. Being chronically ill can flood your identity and you can very easily drown in the face of diagnosis. But you are not your diagnosis, remember that. Take time to do the extra little things you enjoyed to help remind yourself of who you are.

Tips and Hacks for the ‘Chronic’ Life

I try to keep things positive here. I try to leave everyone with a sense that they can do anything and everything they want to, it just may take longer or, you might have to become creative. Chronic Illness, whatever it might be you are struggling with, doesn’t take a break, doesn’t go on vacation and it doesn’t bargain with us. But life continues to tick onward and we can’t stop our lives because of chronic illness. I am hoping that some of these little hacks might help you suceed in your day to day lives so you can live it as much as possible and not feel so trapped by your illness and even your limitations.

Cooking

• Make a Menu: This takes time but it will help you in the long run. Not only will it save you money but it will save time in the grocery store wandering around and tiring yourself out when you could be getting back home. Also, this helps with my next step, cooking in batches because you can figure out what days might work best for you.

• Cook in Batches: You know yourself better than I do; is there a time when you feel better or worse? When you plan your menu, which can also be altered depending how you feel, you can figure out the days you are going to double recipes or precook some items you might need. You can pop in two chickens or even more and spend the day cooking if you feel up to it and then like magic, you have a couple pounds of roasted chicken to work with the rest of the week. If you can’t manage roasting, throw some chicken in the crock pot and cook it for 6-7 hrs and then you are done. The same with ground beef. If you know a couple of menu items need ground beef just cook it all a head of time. A lovely little hack I learned if you have hand or wrist issues like me, use your food processor to ground the meat.

• I think ground beef and chicken are the easier to cook ahead, in batches and in large quantities but you can do this with stew meat or pot roast or even a brisket.

• You will need a few kitchen helper gadgets. A food processor can help with just about every cooking need. A crock pot is essential.

• Strategic development of meal plans. I cannot say how important menu planning is, even if you can’t predict how you are going to feel, having a menu allows you to play the swap game with meals as long as you shop for or make sure you have ingredients on hand.

• Freezer meals are an excellent way to give yourself a little break. You can take them out of the freezer and defrost it a little and toss it in the crock pot. Let it go and rest or take a hot bath or whatever else you enjoy until you are ready to eat.

• Double recipes and freeze half. That way you always have something on hand for those days where you really can’t even get up and cook, all you have to do is reheat.

• Grocery shopping wipes me out. I don’t suggest you grocery shop and cook on the same day unless you have extra help in the house with you. To make grocery shopping easier, make sure you are armed with a list and have already searched out coupons if you use them. That way you are not shopping and then looking for coupons. I organize my list according to sections of the grocery store so I am not buzzing around for hours, because I move slow, and I can really go into the grocery store like a well trained soldier and just grab everything I need. If you can grocery shop in half the time, I think it’s worth it. I also try and shop for two weeks. I shop for the first week all ingredients and produce and for the second week, I shop for all the non-perishable’s I might need so when I go back to the store I am only getting fruits and veggies and things like that. It really helps.

• I would also suggest in your menu planning that you have a combination of crock pot meals/freezer meals, a meal that you double, a casserole dish that’s like dump and go, toss in the oven and a couple of easier meals for days you don’t feel as bad and then, rotate them for the next week, maybe swap out one or two for something new, but the idea is not having to go out and get a bunch of things, because you already have the majority of ingredients on hand.

• If you can, keep your gadgets that you use, like crock pot and food processor on the counter. It might not look pretty or it might clutter things up but it’s really helpful, especially if you live by yourself and may have trouble reaching down to drag out appliances.

Housework/Chores

• Bite-size pieces. Ever hear the expression “biting off more than you can chew?” Well, that is exactly what I don’t what you to do. It’s very easy to try to do everything in one day when you are feeling pretty good, but as you know, it only leads to a world of hurt later. You may say well, at least I got it all done, but it’s far kinder to your body and your mind to parcel out chores.

• There is no such thing as perfection when you struggle with chronic illness, and that is okay. Shoot for doing your best, and forgive yourself if things aren’t tidy as your mind might like.

• If you have kids, it is never too young to start doing chores and even a small child aged 3 or 4 can start to learn to pick up after themselves. It will save you a lot of irritation and grief if you can get all your kids, no matter their age to help you out.

• A light-weight vacuum cleaner is a great investment. If you have a two story house, buying a second hand one to keep up stairs would be helpful too. These are also good for quick passes in the kitchen to help tidy up the floor, or even wood flooring if the model has that setting for bare floors. You can also get a long handled dustpan, the kind they use in stores for cleaning up. It saves you from needing to bend down. Also, a bag-less vacuum to help reduce allergens and pet dander. It also makes easier and faster clean-up.

• Make your own cleaning products. It may sound like a real pain, but in the long run it helps keep you healthier by not breathing in the chemicals from manufactured products. I have done this in the past and will be picking it up again so stay tuned for some actual recipes on DIY cleaning products. I use vinegar as a base, but you can infuse them with lemon peels and orange peels to cut the vinegar scent (which is still better than bleach scent) and will leave your house smelling lovely. They are just as good, they are chemical free and cheaper than buying store bought products. Win Win.

• Go minimalist. You can use this rule: If you don’t love it, if you haven’t used it in six months, worn it in six months, give it away. Reducing clutter not only makes your life easier, it streamlines your actual space so you have to clean less and it has an effect on our psyche and makes us feel better.

• No shoes in the house and make sure to have a good floor mat. No shoes means less tracking of dirt into the home and less to clean. Floor mats mean that guests can also clean their shoes before even getting into the house which means you don’t have to clean that area.

• Line the oven with tin foil to protect it from possible spillage when cooking. It makes for easier clean-up and fewer times you have to grab that spray and clean it.

• Microwave clean-up can be easier if you slide a mug in there with water and microwave it for a few minutes. Top two-minutes. This creates steam and helps get stuck on stuff off. If that doesn’t work, try spraying the inside with vinegar/or your cleaning product and let it sit. Then wipe it away. The goal for us is always to work smarter not harder.

Self Care

• It may seem backwards, or even perhaps cruel, but wake up as early as you can to give yourself enough time to actually get out of bed. I generally wake up sometimes between 6-6:30am so that by 7-7:30 I can roll out of bed and start to move around.

• Comfy clothes are a must. Whether you buy LuLaRoe or some other brand, it is essential to be draped in softness. I just feel fabrics and now I know instinctively what to get. Leggings and tunic blouses are my thing.

• Music therapy. This is no joke. I actually have a play list for high pain days. It helps to be distracted and there is a lot of scientific data that suggests music can alleviate pain.

• Heating pads, mattress toppers, jackets and even heated shirts and car seats. Heat is sometimes your best friend and if it can help, I would keep it close by.

• Sometimes family and friends need a little help when it comes to things we can do, so we can still be a part of their lives. I think it is helpful to send out a kind of memo to friends and family with those activities that you can do and would like to do with them, based on pain levels. Ex: When my pain is at a 5 on the pain scale (1-10, ten being the worst) I can still go to the movies, as long as I don’t have to climb too many stairs to find a seat. OR When my pain is at a 7 on the pain scale, you could come over and we could watch Netflix and binge on chips or popcorn. You come up with activities that you can do when you have less or more pain.

• A Spoonie Kit: This is where all your immediate needs stuff goes. You can make it as an elaborate a box you want, or not, and just use a plastic container from Target. Keep things like prescription meds, Advil/Tylenol, ice pack, essential oils and fuzzy, warm socks.

• Showers: This is rough for a lot of us. Some have a worst time of it than others, but I think it is something we all have issues with. Here are a few tips on how to deal with it and make it easier.

• Use your time efficiently, getting as much done in as little time as possible.

• Install a shower bar if you have balance issues or might become dizzy or faint in the steam. You can even get one with suction cups so it’s no effort to place in your shower. If you can’t fit one, chances are you can fit a stool. Same idea.

• 2 in 1 shampoo/conditioner. This saves the extra time for those of us with long hair that need conditioner. If you can get away without it, go for it! One less step.

• Keep everything close by. A shower caddy that you don’t have to reach to get everything you need or, use a cleaning caddy that some might use for cleaning supplies, to tote your shampoo and soap. Keep it right by the shower where you can access it easily or even in the shower.

• Transfer your shampoo’s and conditioner’s into pump bottles that makes it easier to use for those with joint issues. This is one I am going to do ASAP because it’s genius.

• Terry cloth bathrobe to dry off is also genius. Getting out of the shower can be hard enough, drying off exhausting, so just throw on a robe and wrap up your hair in a towel and just dry off comfy on the bed.

• The biggest hack I will leave you with: Not showering everyday. They also make a dry powder that you can use to refresh yourself with those days you just can’t. Or just doing spot cleaning is okay too. You are the best judge of how you feel and what you can do on any given day. Don’t get pressured and wipe yourself out because you think you should shower everyday.

The Inbetween


So my intrepid warriors, it’s clear I have diverted a little bit from the path, but I promise you I am getting back to it. Those who may not have read the beginning pages, or the first fewblig posts may not know, but part of my mission statement and hence my blog site name, includes food and using food to heal. This is still very important to me! I’ve been diverted from plans, however, because the beginning conceptions I had for alternative diet were pushed to the sidelines because of my doctors advice. I am in the stages of research at the moment. Trying to best discover what might work best for me and my family. The nature of fibromyalgia and the exhaustion it presents makes me leery of going too radical because I’m in no shape to make two different meals and I am never guaranteed to have help making dinner so.. I have to think some more, try out a few different ideas and then I will blog about the experience. I’m giving myself a deadline of October. I hope you can have a bit more patience with me and in the meantime I will still be blogging about chronic pain and chronic illness! 

Much thanks!