Sketch of woman seating isolated. Hand drawn illustration

Is There a Time Limit on Grieving the Loss of Your Health?

I’ve learned over the years that we not only grieve when somebody in our lives die, but that it’s natural to grieve any form of loss in our lives. Of course we grieve when people near and dear to us die. The world has grieved the loss of many celebrities this year. We grieve as we see the devastations happening around the world – both natural and man-made. We grieve the end of relationships and friendships. Grieving the end of a chapter in our lives, the end of a good vacation, even the end of a really good book.

The question I want to ask is, is there a time limit to how long we’re allotted to grieve? Are we given just a few months and then expected to move on? Only allowed to relive the empty space that was once filled by said person, event or thing on the anniversary of its death?

I’ve been grieving the loss of my health for the last year and eight months. Now, for those of you who have never had major health issues, you probably think I should have moved on by now, right? For any of you who have had your diagnosis for the entirety of your life or from a very young age, maybe you’ll give me more time, but you may also think that at a certain point I need to put on my big girl pants and get on with it. But those of you who had good health and then fell ill, losing such a huge portion of your life, you probably understand what I mean when I say I’m still grieving.

I know I’ve broached this subject before, and I probably will again to be honest, but for the first time in months I finally feel like writing again. Why, you ask? Because I’m still grieving. This all still hurts. And it’s so much easier to crawl back in my hole than to try and make you all understand how it feels.

For the majority of people with any sort of chronic illness or pain, winter is awful! I live in Canada and although winter solstice is right around the corner, we still only have sun for a maximum of eight hours a day at the moment. It gets very depressing when there are many days where it’s very gloomy and we don’t see the sun for days at a time. And the days when it is sunny, it’s extremely cold. Everything hurts because of the cold and the damp weather. It hurts just to wear the heavy coats and layers of clothing. If it’s bad weather I’m stuck in the house. Even on nice days, taking my daughter out takes an exorbitant amount of energy just to get us both bundled up to go outside.

I’m reminded on a daily basis of what I once had. The holidays make it well known to me that I am still very sick. I spend the rest of my day exhausted and in pain if I decide to take a couple hours to bake or go do my Christmas shopping. I have had to turn down parties knowing I need to save my energy for other events. I’m not even able to go see my family this year because the travel will cost me too much for the short amount of time I’d be able to spend with them.

I think all of this still part of the grieving process. It’s hard to shake the sadness off. I’m forcing myself to get out of the house, to shower, to get dressed. All things people who grieve struggle with on a daily basis.

I literally can’t go a single day without being reminded of what I’ve lost. Some days are easier than others. Will I ever have a day that I don’t feel sadness? Jealousy of others living without an illness? Anger that this all happened to me? No clue. But I know that I’m not giving up. I will trudge through this. And I will take all the time I need. I refuse to put a timeline on my grieving.

Follow this journey on A Gut Feeling.

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bright orange and pink flowers in a vase in a hospital room

5 Ways to Make Your Hospital Stay a Little Easier

Having to spend a night, a week or a month in the hospital is never fun, whether it is planned or not. I’ve found, however, there are little things you can do to make your stay a little more doable.

As I was getting ready to have surgery, I knew I would be in the hospital for at least one night, possibly more. This got me thinking about my previous hospital experiences and the tricks I’ve picked up on.

Here are my top five hospital tips:

1. Pack a bag. This is obviously easier if you know in advance you’ll have to be in the hospital overnight, but you can also have a bag at the ready if you’re prone to frequent unplanned hospital visits. I’m always freezing in the hospital gown, so I bring some sweatpants and a sweatshirt for when I’m allowed to wear them. I also like to pack some of my “creature comforts.” These include my favorite lotion, a sleep mask, a little stuffed penguin, a book and my headphones.

2. Make sure you’re comfortable. I’ve learned that being shy about asking for things in the hospital is pointless. If you are cold, ask for hospital socks and an extra blanket (or two!). If your bed isn’t comfortable, ask for another pillow. Sometimes these won’t be available, especially in a busy emergency room, but it doesn’t hurt to ask.

3. Make the room feel less like a hospital room. If you have to stay for longer than a day or two, being surrounded by blank hospital walls can start to get to you. See if a friend can bring flowers (if you’re allowed to have them) or something to tack up on the wall to brighten up the room.

4. Don’t fight the urge to sleep. Unless you’ve been medically advised not to, there is no reason why you shouldn’t let your body rest while in the hospital. I take naps whenever I can, especially if I’ve been admitted, since getting woken up in the middle of the night and at the crack of dawn for vital sign checks are not conducive to a good night’s sleep.

5. Speak up. If something doesn’t feel right, or you have a question about a procedure or test results, don’t hesitate to ask, and ask again if you don’t get answers the first time. You are the patient, and you deserve to know what’s going on with your body.

Being in the hospital is never fun, but these tips help make hospital stays a little more bearable. If any of you have any other hospital tips, I’d love to read them!

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woman with a red umbrella in the snow

A Grown-Up Christmas List, From Someone Living With a Chronic Illness

Driving in my car, I heard the song, “My Grown-Up Christmas List,” on the radio. The lyrics talk about “no more lives torn apart” and “that wars would never start.”

That got me thinking what my grown-up Christmas list would consist of. And we’re not talking about the list of items I give to my family when they ask me, “What do you want for Christmas?”

If I could compose a list, just for me, of the things I really wish for, it would look something like this:

• The ability to consume solid food without pain.

• For my digestive system to accept, process and absorb the food I put in my body.

• For a doctor who will listen and not just look at my physical appearance.

• For a doctor to consider an “out-of-the-norm” possibility.

• My strength back.

• My energy back.

• A solid night’s sleep without waking up multiple times from the pain and being unable to fall back asleep because of the pain.

• For my family to understand that it is not me being short-tempered and miserable all the time, it is my illness causing me to act like this.

• A diagnosis.

• For my body to regain it’s ability to perform the normal functions it is capable of.

• Not having to take over 30 pills a day.

• To live a pain free life.

• The strength to keep fighting.

These lyrics in “My Grown-Up Christmas List” pretty much sum up how I feel: “I’m not a child, but my heart still can dream.” I am an adult, and I know this list isn’t very practical given my current condition, but I can dream.

I long for the day I find an answer or treatment. I long for the ability to regain my strength, energy and ability for my body and digestive system to function again. I dream of being able to live my life again.

I never felt like I could give or tell this list to anyone. It seems kind of sad reading it over. These aren’t the things anyone would expect to see on a Christmas list, but coming from someone living with chronic illness, these are the things I would really want. The items on this list aren’t something that can be bought in a store. They aren’t things that anyone can wrap in a box and give me on Christmas morning. But the last item on my list is something my family and those closest to me can help me with: the strength to keep fighting.

I can’t promise I will always agree with them when they say, “There will be an answer, this will not last forever or don’t worry you will find the doctor you need one day.” Sometimes it’s hard for me to keep a positive outlook and believe that one day there will be an answer, a treatment or a diagnosis. Nonetheless, hearing these words helps give me the courage to keep persevering.

The support, encouragement, love and hope those around me can provide me with are the most important things of all I could ask for at Christmas time. 

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What People With Chronic Illnesses Need This Holiday Season

For many people, and especially children, Christmas is the most wonderful time of year. But for people with a chronic illness like myself, it can seem like a personal hell we have to live through every day until the world and temperatures return to normal. I feel like it’s a miracle to survive the holidays each year. I hope to share with you some ideas on how to make it through the holidays or help a loved one.

I received my fibromyalgia diagnosis two years ago after three years of symptoms, ranging from chronic, debilitating fatigue to random bouts of stabbing pains — everywhere. I’ve been sick for so long. Migraines are terrible, but for me, they’re just a symptom of a larger disease. I truly appreciate what all people with chronic pain feel. Even if it isn’t as severe as my illness, I still understand what they’re going through. Pain doesn’t discriminate between one person to the next.

I’m so tired all the time. Most people during this time of year are rushing around doing a thousand things and going a million places. They don’t take a moment to slow down and enjoy their friends or family. I feel like if people just slowed down and took in more time to enjoy art, music, books and poetry, it might just make the world a better place.

I believe you should be present, be merry and, most of all, represent the spirit of Jesus Christ at this time of year. If you aren’t Christian, do the equivalent. Be a light in times for others even when you are in dark times.

If you’re like other people with chronic illnesses, I know chances are good there’s a major food you can’t eat. Whether it is sugar, gluten, dairy or otherwise, it can make the holidays a nightmare. People no longer want to invite you over because it causes them stress and discomfort. I try to let the host off the hook by saying I will eat beforehand or bring snacks. I still want to be part of real life, and I don’t want to be a burden. You should also have available a list of foods you can/can’t eat if the host requests one.

How can family members or friends help? They can be understanding and compassionate above all else. It helps when we feel we will always be loved. I try to practice this every day with my children, so they see Mommy loves them. No matter how much I hurt, I will return to normal. Sometimes the seas are calm and sometimes they are rocky. We all ride on this ark together — two by two.

Friends and family also need to understand that people with chronic illnesses can experience depression during the holidays. It can revive memories and flashbacks we would rather forget. It makes me especially sad because I have few living relatives. I don’t receive many calls or cards at Christmas. I made it a goal this year to handwrite Christmas cards to anyone who needs one this time of year. No questions asked. I also included some handmade earrings. I didn’t know most of the people I sent them to. I only knew they needed to feel some love this holiday, and I had some to give. It brought me joy.

Consider asking what you can do for someone who is sick or has disabilities. If they’re like me, they’ll probably refuse help or say they’re not sure what they need, which is true most of the time.

Here’s a list of what people with chronic illness need this season:

• Lots of love.

• Compassion

• Joy

• Ask for a list of three to five go-to foods you can pick up at the market and drop off. (Mine are always electrolyte water, kombucha, Late July sea salt chips, paleo beef jerky and any type of citrus.) I don’t always want food prepared for me, since I don’t know what’s in it and can’t take a chance to have a new food make me ill.

• Ask when it’s OK to visit and show up. (If the person isn’t well enough for visitors, drop off a card or some other small token of your appreciation.)

• Call and leave funny and sincere messages.

• Tag them in something fun on Facebook or send them a tweet.

• Send them funny memes or videos (if they like them).

• Reach out as many ways as you can and make them feel loved.

• Always tell them how much they mean to you.

Here are more gift ideas:

• Slippers

• Robes

• Socks

• Books, comic books and magazines.

• Heating pads

• Portable heaters

• Electric tea kettles

• Pillows

• Flowers (ask about allergies first).

• Bottled water

• Stuffed animals

• Coloring books and markers.

• Art supplies and craft kits like crochet, sewing or beading. Think of something nice to do in bed or sitting.

• Tens Unit

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cylinder shaped gift wrapped in paper and tied with fabric bow

How to Manage Christmas If You're Having a Difficult Time With Your Illness Right Now

When you are living with an illness such as myalgic encephalomyelitis/chronic fatigue syndrome, or any chronic illness, Christmas can be a really difficult time.

Seemingly simple things that others take for granted, such as sitting at the dinner table, may well be impossible for you right now. There may also be a temptation to push yourself through symptoms much more than you usually might on any other day.

Something else that I think so many of us experience is your mind doing the whole comparison thing. Comparing how things are this year… to how things were last year. Times like Christmas make the passage of time very apparent and if you aren’t where you ideally would like to be in life right now, this time of year can evoke really difficult emotions.

I truly understand these feelings, as well as many others, which is why I’ve written this post. Hopefully it will help those of you not feeling too great right now, manage Christmas this year a little more easily and feel less alone.

Here are some little tips to help you manage the next couple of weeks….

1. Remember other people are struggling too… you’re not alone.

Many people find Christmas difficult for a variety of reasons. These people may be physically well and able to attend a social event or trudge round the shops, but it doesn’t mean they are having the best of times. People who struggle with social anxiety, or illnesses such as depression will also be having a tough time right now. As will people who are feeling lonely or those who have recently lost a loved one. I don’t want to make this into a big list of why people struggle at Christmas! But I’m trying to just balance things out, as I know my mind has often been taken down the ‘everyones having a perfect Christmas but me’ path. It’s not always true.

2. Do something lovely for yourself.

This will obviously depend on your current level of health. But make sure you do something extra lovely for yourself to make your own Christmas Day the best it can be.

If you are bedridden, maybe have a special breakfast in bed? Light a candle next to you. Have some fresh flowers in the room. Download a new audio book or some lovely relaxing music. Let your family come and sit with you for as long as you are able. Maybe ask a family member to give you a little hand massage?

This year, I plan to have a peaceful day where I listen to my body as much as I can. I’m going to dip in and out of socializing, quietly slipping off to my room as and when I need to. I’ll do a meditation and some relaxing yoga mid morning and I’ll have a sleep mid-afternoon – but this is one Christmas time activity where we can fit in with everyone else, because loads of people have a Christmas day snooze!

3. Do what is right for you.

I’ve spent so many Christmases faking a smile, talking to relatives and pushing myself to sit and chat to people when my body has been screaming for rest. I’m not entirely sure why I used to do this? Embarrassment on some level at having to say, “I need a lay down now?” Or not wanting to miss out on anything, so forcing my body to stay upright when I really needed some quiet time laying on my bed.

I urge you to be aware of this behavior pattern that so many of us can slip into if we aren’t careful. If you need to excuse yourself, do it! Have as many rests as you need. What other people think shouldn’t matter as much as your own self care and your recovery.

4. Perspective

This is an important one. We can put a lot of pressure on ourselves to have a “good Christmas.” With ideas about how it should be. Remember, that this is one day that will come and go. Just like all the others. This time in a couple of weeks it will all be done! Don’t allow yourself to get too hung up on one day and definitely don’t pressure yourself to try and feel any certain way.

However you are feeling, try not to forget the meaning of Christmas. It’s not really about how much you can “do” (although I know that in an ideal world we would all like to be feeling well and be able to do certain things at this time of year). Christmas will have its own personal meaning for you. But for many, it is a time to celebrate and show love to our families and those we care about. We can do this, regardless of how well we are feeling.

5. Create a little ritual for yourself.

This is something I first did last year and shall be doing again this year. Last Christmas was difficult one for me personally as it marked the first year since my Dad passed away (he died on the night of December 26, 2014).

Because I had a feeling it may be a little difficult, I decided a few weeks beforehand, to do a little Christmas ritual for myself on Christmas day. To create some space for myself on a day that had the potential to be overwhelming.

Mid-morning I quietly took myself off to my room, lit a candle, and did some silent meditation. Then, I opened a gift from myself… to myself. This may sound strange to some of you, but for me, it was a little symbol of self love — after so many years treating myself harshly and those around me with love. It was time for me to receive love from myself too!

This year I will do something similar, and also maybe pull out an Oracle Card or two. Having some quiet time like this, amongst what can be a chaotic day with family and friends, is also a lovely way to connect back to your center and spiritual self.

If having your own little ritual resonates, take some time think about what feels right for you and create your own for this Christmas. It doesn’t have to be anything elaborate, just something that feels symbolically like something you may like to do for yourself.

6. Dealing with The Passage of Time

When you have been ill for some time, occasions such as Christmas can mark the passage of time. For people well on their way to recovery, this passage of time can lead to smiles and celebrations as they notice their progress. But if you are still very much in the middle of your experience with ME/CFS, or are in the midst of a setback, a feeling of panic may wash over you as ‘yet another’ Christmas is upon you.

I know for me personally, Christmas approaching can be tough for this very reason. My mind naturally wants to compare myself to how I was X amount of years ago and say, “Oh but Emma, you are physically worse now than you were then…” (followed by a spiral of “I’m never going to get better” thoughts).

It doesn’t take a genius to see this way of thinking isn’t useful. If you find yourself doing this, (which if you are human and not feeling too good, you probably will!) gently remind yourself, again, that Christmas is just a day! Lots of things will have affected where you are at in your recovery so far, and I know for me, reminding myself of that actually brings some comfort.

7. Gratitude

I know there is a lot of talk around gratitude at the moment. But it really is important.

Sometimes, when we are feeling like things can’t get any worse, the thought of being “grateful” can actually make you feel cross and angry and like the last thing on earth you want to be doing in that moment. But actually, taking a few deep breaths, and reminding yourself of some things in your life that you feel you a truly thankful for, can help you feel calmer and more at peace. There will be many things that you have in your life, that others can only dream of having. Notice some of the things you do have in your life.

8. Be present

Allow Christmas Day to unfold exactly as it needs to. As Echart Tolle would say, all we have is this moment. Let each moment be exactly as it needs to be and throughout the day, especially during moments where you find yourself getting stressed or worked up, take a moment, and bring yourself calmly back to your breath.

Remind yourself also, that a brand new year is just around the corner. With much brand new hope and so many possibilities.

Don’t forget this.

Wishing you all a really peaceful Christmas.

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mother reading a book in front of christmas tree

10 Tips for Getting Through the Holidays With a Chronic Illness

Is it that time of the year again? I don’t know about you, but it seems to me that the years just fly by. If anyone knows how to slow them down, please let me in on the secret. So, I thought I’d try something new… or at least new to me. We’ve all seen the articles with lists on how to accomplish just about anything. I thought I’d make up one with tips for making it through the holidays with a chronic illness. Here it is:

1. Make Lists: Lists of things you need or want to do. I have a baking list, house-cleaning list and a gift-giving list (actually, I have a gift-giving app this year which I love!). OK, now throw them all away… just kidding. Prioritize those lists. Delegate and let some things go. Find shortcuts. And don’t be a perfectionist. There’s no room for perfectionism in a chronically ill person’s life.

2. Ask for help: Ask for specific things. I don’t like to depend on anyone for help, but if it means making the holidays more manageable, I think it’s worth it. Sometimes, people will offer to help, but they don’t say what they are willing to do. Having a list ready with ideas of what others can do for you will come in handy when people make those kinds of offers. Do you need help with laundry? Running errands? Housework? How about help with wrapping gifts? Think about all of your regular and holiday tasks and delegate some of them to family members and willing friends.

3. Pace yourself: If you know you have a party to go to in the evening, that morning is not the time to scrub out your tub. Ask me how I know this. This is another area in which I struggle. Pace yourself throughout the day and over a period of several days. If you are planning on going shopping with friends on Saturday, plan on Friday and even Thursday being light activity days.

4. Plan meals: I normally try to cook four or five nights a week. We usually eat out once a week, and the other nights we have left-overs. But cooking four or five nights a week can be a lot during the holiday season. To make things easier, I prep as much of the meal as I can in the morning when I’m at my best. For example, If I’m going to make a casserole that evening, I will chop the vegetables up and brown the meat (if needed) in the morning. I also love to use my slow cooker this time of the year. It’s so nice to put everything in there in the morning and have nothing or very little to do come dinner time. One thing I’ve done to help with meal prep is to cook and freeze chicken breast for casseroles, salads, etc. I put 3 or 4 pounds of breasts in the slow cooker with some seasoning and chicken broth and cook them for about four hours. Then, I shred the chicken and freeze in two cup batches. I have a few bags thawing in my refrigerator now for a casserole I’m making later in the week. I always try to make soup once a week this time of year. And we occasional have a sandwich night just to make things easier. I’ve also been known to have a Stouffer’s lasagna in the freezer for a quick and easy meal.

5. Eat right: It’s OK to have some sweets in moderation (so I hear), but make sure you eat enough of the good stuff. In the past, we’ve actually bought and cut up vegetables and had them ready to eat in the refrigerator. It’s time to do that again. Seasonal fruit is a healthy snack or a great addition to a meal. I always try to buy a bag or two of the ready salads at the grocery, but to make them a bit more nutritious, I make a stop at the salad bar and fill a box with more lettuce and a variety of other vegetables. Yes, it costs more this way, but it’s so much easier to buy the pre-cut vegetables. It saves time, and it’s easier on my aching joints. Make sure you have a few sources of quick protein available. Healthier protein bars, nut butter, yogurt, boiled eggs, cheese, etc.

6. Keep managing your chronic illness: In other words, go to your scheduled doctor’s appointments and take care of yourself. It’s so tempting to cancel this time of the year, but, if you can help it, don’t. If you are due to have any tests, lab work or surgeries, try to get them scheduled before the end of the year if you’ve already met your deductible. That’s stating the obvious, but it’s the smart thing to do. Make sure you are taking your medications as prescribed. If you are traveling, be sure you have enough medication for the duration of your trip. Find out if you can get a refill at a pharmacy where you are vacationing if need be. If you have special dietary needs, keep them in mind when eating out and preparing meals. Now is not the time to go off a medically necessary diet (not that there ever is a good time).

7. Connect with others: Not just the family you are expected to be with for gatherings but with friends. Have a quick get together at a coffee shop, have a girlfriend over to watch a sappy Christmas movie. Make an effort each day to reach out to someone. Text, Facebook, instant message, make a phone call. You don’t have to carry on an hour-long conversation, just a brief connection can be enough. I know when I go a few days without connecting with a friend, I feel down. Friends truly are good for your health.

8. Find “me” time: Whatever it is that you enjoy doing, keep doing it. I love to read, and I usually try to read some holiday-themed fiction books. If you are crafty, find a small project you can do. Watch holiday specials and those Hallmark Christmas movies (even if you know how they are going to end). Anything that gives you pleasure and keeps your mind off all you need to do and how you are really feeling is worth doing.

9. Make time for your spouse or significant other if you have one: It’s so important to keep communicating, especially if you aren’t feeling so well. Be honest about how you are feeling and ask for help when you need it. Go on inexpensive “dates.” Drive around and look at the Christmas lights, stop for some hot chocolate, attend a Christmas program together. Just enjoy each others company.

10. Remember the reason for the season: It’s so easy to get caught up in the baking, partying, shopping, decorating, etc., but that’s not really what it’s all about. If you are a religious person, keep attending church services and go to the special holiday programs. If you’re unable to attend, watch or listen to services online. Chances are if your church doesn’t offer online services, another one in your area does. Listen to religious Christmas songs along with the pop tunes. If you aren’t particularly religious or are a nonbeliever, find other ways to nurture your spiritual side. Meditate, attend holiday community events, just find peace somehow.

Well, there you have it. I hope you found something you can take away from the list. No doubt, you’ve heard some of these before. But it never hurts to hear them again.

Until next time, Merry Christmas and Happy New Year!

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