Young girl is relaxing on the armchair with tea and text 23 spoonie hacks that can make life with chronic illness way easier

23 Spoonie Hacks That Can Make Life With Chronic Illness Way Easier

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If you’re a spoonie it means you have a chronic illness that probably limits the amount of energy you have each day. You might not be able to do everything you want without crashing later, so saving energy (“spoons”) wherever you can becomes crucial.

Since every spoonie has his or her own tricks and strategies to conserving energy, we asked our Mighty community to share their best “hacks” that help make their lives easier. From getting through a busy work day to saving spoons while showering, this is what real people with chronic illnesses do to manage exhaustion.

Here’s what the community told us:

1. “Shower chairs are an incredible invention. Use them!”

2. “I plan the next day every night before I go to bed with a notebook… what to wear, what to take for lunch, what kind of schedule I have for work, pack any essential items I may need, and etc. It makes the mornings so much easier to have a plan because if I am stressed or anxious it all just gets worse, and if I don’t have a plan and my mind gets all fuzzy then I am just a frantic, confused mess.”

3. “Have stools in the kitchen. Sitting and cooking or washing up is so much easier!”

4. “My slow cooker! I have a family of four to feed so almost every day I slow cook! I put it on in the morning when I still have a few spoons because by 5 p.m. I’m all out of spoons. I also like to precut and have organized foods in the fridge for my boys — that way if I’m not feeling well after I pick them up from school they have food they can just grab.”

5. “If I have four things to do in a day, I only do two, maybe three — that way I feel in control when I stop, rather than letting the pain and/or exhaustion dictate when I stop and make me frustrated.”

6. “I also have baskets under the coffee table with extra meds and things to keep me busy like knitting and coloring when I am stuck on the couch all day. Don’t worry, no kids around to get into the med basket. They’re fabric, nice-looking baskets, too, so people often don’t notice what’s in them. I also do the same for my meds in my closet. A nice pretty basket organized by specific meds so my husband can just grab the whole thing for me instead of rifling around looking for something.”

7. “I order from Amazon on a program called Subscribe and Save. The same time each month I get an automatic shipment of things I buy regularly, like dog food, vitamins, personal care items. This saves me time and money. Leaving the house is always a pain day for me so these shipments keep me from having to go out. It really is very helpful to me.”

8. “The CareZone app has spots to write your symptoms, a medication scanner so you can have all of them in your phone and a calendar to track appointments and it even sends reminders. There’s also an option to get your prescriptions delivered to your door which is nice, but [I] have never tried.”

9. “I suffer from short-term memory problems, or brain fog. When I think of something for later, I often record a video of myself explaining my thoughts. That way, I can reference it later when I struggle to think, ‘What was I supposed to remember?’”

10. “Lots of batch cooking. I spend a day or two whipping up things that are healthy and go in the freezer. Then I can take out something and have multiple meal options with minimal fuss and energy.”

11. “When you tell people you don’t have energy to tackle all your chores at once, they often tell you to break it down by room. Tackle the bathroom one day, the kitchen the next, etc. Well, sometimes I don’t even have energy for that much work. So I break it down by task and order of importance, and then I tackle those one step at a time. If I can only clean the toilets one day and have to put off the other, non-pressing chores, so be it. I’ve come to peace with the fact that my dwelling is never going to be spotless, and that’s perfectly understandable.”

12. “Phone and tablet cases that hold them up without you physically holding them are great. We all know the priorities of still needing to use technology even at our worst.”

13. “I have wellness Wednesday. I take that one day of the week to shut down and rest. I will juice, yoga (if I feel like it), detox bath, and for dinner, I eat super clean. I just allow myself the whole day off. I also use Amazon Prime as much as possible and Kroger ClickList for my grocery shopping. It has been a lifesaver.”

14. “My hack is ‘No.’ I had to learn it for myself, for others, for everything. No, you don’t have to shower today. And it’s OK. No, I can’t cook for ____ work function. No, I can’t direct traffic at school. No. And no with no excuses. ‘I’d like to but no, I can’t. I’m not sure how my body will handle that so I’m going to have to decline.’”

15. “I can’t sit on park benches or stand for long periods of time. So, I keep a camping chair in my car — that way I can take my kids to the park or pool.”

16. “I put together an ER pack for when it’s time to go with all the essentials.”

17. “Fancy leggings and tunic tops I can wear at work and feel comfortable.”

18. “Give yourself the same love and compassion you would give someone you love or even your childhood self dealing with this.”

19. “Something I’ve been doing lately is rolling around on my office chair. When I’m too sick to stand I can vacuum, clean, change room or do many things in my makeshift wheelchair.”

20. “Become very deliberate about grocery shopping, meal planning, and cooking/food prep… When I shop, I meal-plan three to four meals during a shopping trip, then I write a rough schedule for meals for the week so I can have things pulled out of the freezer if need be, and I don’t have to think too hard/process things when I’m not feeling well.”

21. “Have Poptarts and Gatorade by the bed for those days your body can’t fathom getting up.”

22. “If you suffer from sensory overloads (autism, fibromyalgia, etc.) or chronic migraines/headaches, wear sunglasses inside so you don’t have to be in a pitch black room. (Though, if it’s not enough and need to be in a pitch black room, do so and ignore this advice).”

23. “Asking for help. Sometimes its so hard to do, but my friends and family have been amazing to me. I have been carried, pushed around in my wheelchair, helped to eat, drink, change my clothes, wash my hair. They have even helped me care for my children. My support network is my everything.”

What spoonie “hacks” make your life easier? Share in the comments below.


23 Spoonie Hacks That Can Make Life With Chronic Illness Way Easier

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Coping as a Chronically Ill Parent

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Let me draw your attention to a good article by a parent on The Huffington Post called “6 Survival Tips for Parenting When You’re Sick.” Please read before continuing.

Now let’s think about putting these into practice if you’re a chronically sick parent.

Point 1 advises you to “do the bare minimum.” Basically put life on hold and catch up when you’re feeling better; that makes sense right? Forget the housework and rest… knowing that by building up your strength, you can complete these tasks with gusto. Sure that’s common sense — to a normally healthy person.

Now I’d like you to see this situation from the view of a chronically sick parent. Imagine taking this advice if you are sick every day. If I didn’t drag my pain-riddled backside out of bed, my family would never eat, never have clean clothes and would live in a pigsty. I could rest for 100 years and never feel “better” or complete tasks with gusto. I have to forget ever feeling better because it’s never going to happen. I have no choice but to get on with it.

Yes, I totally agree that parenting while sick is hard. I just ask you to remember that some of us do this daily, forever. A common cold isn’t a death sentence.

Point 2. “Call in the troops and ask for some help” even though you find it hard for others to handle your jobs in their own manner. Let them feed the children, entertain them, help with chores and even run errands. You feel guilty asking, right? It’s hard to lose your independence and ask someone else to take control of your life.

Now again from a chronically sick perspective, this is hard — not just because we have to ask for support but because we repeatedly have to ask for support. I no longer feel I have true independence or that my life is my own. My life is a series of spontaneous plans based around how I feel every day. I can’t regularly walk my son to school, I can’t always look after my own children, and I hate having to see my partner solo parent while I’m in bed in pain. I don’t do bath time anymore due to the pain of bending over, I cook erratically, and often dinner is fast and thrown together. I spend many, many hours alone. Alone in bed, sleeping my life away while someone else manages it.

My children have been passed from pillar to post since birth, with my many wonderful friends looking after them. The guilt I feel is insurmountable but “they know you love them” is what people reassure me. This doesn’t make the situation any easier. I want to look after my children.

Point 3. Encourage empathy. Being unwell allows you a chance to show your children and loved ones how to express empathy. It lets them show the human ability to care for another. To be patient and understanding, just until you’re on the mend. It’s not much to ask and it won’t be forever…

Unless you’re chronically sick! Unfortunately empathy can only stretch so far. Even those close to you can get tired of being the “strong” ones. They can’t repeatedly tell you “there, there it’ll be OK,” when they know it won’t. There’s only so much positivity you can grasp from loved ones, who also experience the feeling of despair and hopelessness you feel. Your loved ones don’t want to have to feel sorry for you all the time. They want to build you up and give you hope and positivity. My children really feed off my situation and it’s incredibly hard to hide when I’m struggling. I don’t want to affect their behavior or worry them.

There’s also a right and wrong time for each emotion and so you all end up tiptoeing around each other. Too much positivity when all you feel is despair can often tip you over the edge. Sometimes you do just need to embrace the feeling and work through it. It’s all part of the acceptance process you regularly revisit. I’m fortunate to have very caring children.

Point 4. Sharing germs. Now this is an important one right now. You try your hardest to keep your children away from other sick children, right? Then when your children do fall ill, you find yourself saying, “Well I’m not sure where they got it from, it must have been so and so’s fault.” I see many parents saying, “Well I better not get it, I have too much to do.” Indeed as parents, you don’t have time to be sick. You have a job to go to, children to look after, a house to run.

I’ve given up trying to explain to people that I’m immune suppressed and that many basic illnesses are much worse to someone like myself. There’s absolutely no point trying to quarantine children, especially if they are at nursery or school age. They will get bugs along life’s journey and these illnesses can pass. There’s no point worrying about who or where they contracted it from. Why seek blame when bacteria is all around children? As adults you can try harder to not spread germs.

I probably spend most of the winter months with additional bacterial or viral infections due to the nature of the season. I don’t see many adults worrying about spreading germs. In fact in nearly every office I’ve worked in, I’ve had to explain why being a “martyr” when sick is not a smart move. Yes, you’re concerned about money. Yes, you don’t want to have a sick day… but by taking your germs into an air-circulated area, you are choosing to infect a whole heap of people. With children it’s often impossible to avoid but adults… you can be a tad wiser about this. I don’t just get a cold for a week, maybe two. It can hang around a whole month or two. I can’t fight infection due to the medication I take for arthritis. My immune system doesn’t function properly and so must be suppressed to prevent it attacking my body, causing widespread inflammation. This means I can catch germs faster and suffer much worse. I have a flu jab every year because the flu can be fatal to people like me.

So next time you feel too proud to stay off work, or worry about “what the boss will say,” or losing money, just remember some out there may get far sicker from catching your cold. If they work, they could lose a months pay or have to work while incredibly unwell to keep a roof over their head. Your two days out sick could prevent a disaster for a chronically sick person. Be smart, not a hero.

Point 5. Stop trying to be the perfect parent. This is an emotional one for me. We all want to do right by our children. The thought of keeping them stuck indoors for a few days just seems cruel, right? They get bored, start to misbehave and you know this is your fault. However it’s just for a day or two.

Now think about being stuck indoors for a week… or more. I can’t move from the sofa and my daughter is begging me to play, go outside or make her something. I physically and mentally can’t parent for 70 percent of the time at the moment. It’s become increasingly hard for me and my family. We’ve sought help from local services but so far haven’t received anywhere near what we require. My partner chooses to work, so we can stay independent of benefits. Due to this, we are therefore not entitled to more help with our children. It’s not my partner’s fault I’m sick… why should he quit to be my carer and help with the children so we then receive more support? It’s nonsensical. The system is all wrong.

I have missed out on so much time with my children. They spend more time with their child-minder, friends and Nanny than they do me. I find this so hard but have to remind myself they are safe, fed and loved. See my previous blog post “Mummy’s Guilt” to read more on this subject.

Point 6. “Avoid getting sick in the first place.” Unfortunately being immune compromised means taking vitamins and miracle snake oils have zero effect on my immune system. I simply have to deal with it. If I want to be able to walk and not be in bed daily, I have to stay on my immune-suppressive meds. I have to make a choice between one ailment or another. There’s never an easy option for the chronically sick. Most medication comes with its own side effects, and we merely swap one problem for another. If I could have just three weeks of every month well, I’d be elated. Right now my flares are cyclical and I spent 50-75 percent of my time sick and in heaps of pain. I will always extend empathy to anyone who is sick. We all deal with our ailments individually and as only we know how.

All I ask in reference to the original six points are the following six points…

1. Never call or see parents as lazy. If we’ve managed to keep on top of jobs, you better believe we’re amazing!

2. Support us unconditionally. Understand we want to remain independent too.

3. We are empathetic if you’re feeling sick, but sometimes hearing about it feels insulting.

4. Don’t be a martyr. Stay home if you’re sick.

5. Don’t judge our parenting. Support us, and reassure us. Never say, “Well, why did you have kids?”

6. Do offer support. Don’t offer snake oils, mindfulness or miracle cures. We’re the experts.

I’d like to add that it still surprises me when I hear comments insinuating that we choose to be sick. After reading this, do you think we like being this way?

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What I See When I Step Back and Reflect on 10 Years of Chronic Illness

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When I take a step back and reflect on my life, I can see how strong I have been forced to become. I think of the magnitude of pain I have ignored in order to fall asleep at night. I remember the days spent at home when I was too weak to leave the house. I feel the deep fear when I remember nights spent worrying about what will happen to my body; what will become of my life? I sense the despair that takes over when I imagine how my illness may affect my children’s lives and how much I will miss out on as they get older. And then I mourn; I mourn the loss of the perfect life I once had.

At 21 years old, I couldn’t have foreseen the dramatic life change that was coming my way. When my life took a nosedive, I was forced to move on despite every obstacle working against me. Despite the pain and the fear and the disability, I knew there was no choice but to continue searching for answers and to continue living. One day at a time, I woke up, took a deep breath, and moved on with my life the very best I could.

Yes, sometimes I am angry. Many days I feel cheated. I think of the opportunities and the life experiences that are passing me by. I think of the vacations I would have taken and the day trips I would have enjoyed. I think of the friends I would have made and the friendships that would have been nurtured. But I can’t have it all. I have my family, and for now I focus on us.

There will be brighter days in my future. Will I be strong again? Maybe not. Will I go hiking on my 30th wedding anniversary? Chances are no. Will my legs take me on a bike ride at some point? I can’t say. But I will maintain my hope. I’ll hold onto the prospect that maybe one day answers will come my way. I’ll wake up each day, take my deep breath, and remind myself of all the wonderful things in my life; big and small. Because when I take that step back, and truly reflect on my life, there’s a lot of good that stands out among the ashes.

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When You Feel Like a Stranger to Your 'Old Life' of Better Health

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Another year is starting and the family holidays are behind us. During those holidays, did your friends and family pull out old pictures of you and tell stories about different times in your life? Sometimes, tales about before you got sick or when you were “better?” In my case, people often tell stories of when I was better in terms of my illness than I am now.

A lot of feelings can bubble up when this happens: anger, bitterness, even resentfulness. You can have these feelings about yourself, God, your family and friends. They can be hard to deal with, especially when you know the holidays are meant to be a cheerful time. I would like to echo, as I have time and time again in this column, that your feelings are valid. You are allowed to feel whatever it is you feel, for as ever long as you need to. We all deal differently with the hands we are dealt.

Other factors also come into play when old pictures and stories start making their way around the dinner table, such as my father passing away when I was a child. When I look at old pictures and hear others tell their versions of my life, I sometimes feels like that was another lifetime — as if this didn’t happen to me, or as if I didn’t live through that time. Even though I did, and know the events are true — they feel remote, another lifetime ago.

This can be extremely uncomfortable, and I think most people with a chronic illness keep quiet about these feelings because they’re so difficult to understand. It takes time, but you can make peace with your old life, with your past. I don’t know how, honestly. I think you adjust with time. You age and you mature, and you make peace with whatever life you had before. But the thing about a chronic illness is that you have to constantly keep making new peace with yourself. You need to constantly forgive yourself, rebuild and start over. You need to constantly find a new normal, sometimes day to day. I promise you, the effort is worthwhile. Life does and will get better, even if that seems impossible, even if right now you feel uncomfortable — remind yourself of how far you have come and all that you’ve been through. You are tough. You are worthy.

This blog was originally featured on Cerebral Palsy News Today.

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The Moment I Realized I Would Never 'Get Better'

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I was diagnosed with lupus and antiphospholipid syndrome more than 10 years ago. Catastrophic antiphospholipid syndrome, a type of thrombotic storm involving simultaneous blood clots in small and large blood vessels around the body, followed shortly after. Talking to lupus patients, a common frustration is how long it takes to get from the first appearance of troublesome symptoms to diagnosis. That was never an issue in my case. My disorders’ unusual and cataclysmic presentation ensured a rapid response from doctors and the immediate start of intravenous chemotherapy cycles. It took two months from the appearance of the first symptom to get a diagnosis and access to treatment. For the past 10 years the cycle of organ-involving complications and severe treatments has continued unabated. From a bone marrow transplant to hemolytic anemia and from idiopathic angioedema to immunoglobulins and low immunity, and from epilepsy from blood clots in my brain to deep and superficial venous clots; it’s safe to say it’s been a long time since I was ever truly well.

A few years ago I noticed I could no longer stand upright for more than a couple of minutes without becoming dizzy, weak and unsteady. Initially I chalked it up to just another bizarre cluster of symptoms and decided to ignore it, if only to see if it would go away on its own. At the same time my joints began dislocating almost daily. I was referred to a physiotherapist, but after a few months of physio exercises aggravating the problem I decided to go to a specialist. The physiotherapist had mentioned my joints were loose and I’d read “severe generalized hypermobility” on my medical reports, so I Googled hypermobility specialists and found a rheumatology consultant highly specialized in this area. I went to the appointment hoping she would give me different physiotherapy exercises or perhaps a brace to stabilize my joints and could maybe also explain to me why I was becoming increasingly unable to walk far without my knees dislocating. The specialist read all reports, listened to my story and examined me. She then proceeded to say that on top of the immune defects I knew I had, I also have a genetic mutation that makes collagen weak.

Collagen is a protein found in all of the body’s connective tissues. In layman’s terms it is the material that helps scaffold a person’s joints, muscles and tendons. When collagen is defective, joints no longer have a normal range of motion and can slip in and out of their sockets multiple times a day. I know what you’re thinking. Surely if a process like that is repeated often enough it can no longer be painful, but actually pain worsens each time it happens. When a joint dislocates it damages the muscles and tendons that surround it, and every time the process is repeated those muscles and tendons get more and more irritated and damaged. Defective collagen also affects the walls of blood vessels around the body, making them weak. In practical terms that weakness means that that as blood flows through vessels with high speed aneurysms can form and the walls of the vessels can suddenly tear.

I asked the specialist what I could do to stop this process. I was used to having medical emergencies where doctors could intervene to stop a disease process from continuing with varying levels of success. Only this time there was nothing to do. This was a genetic defect; my body was built with a defective protein, and that would never change. I asked about the difficulties I was having standing upright and, after yet another examination, I received a clinical diagnosis of postural orthostatic tachycardia syndrome – often referred to as POTS – as well. The specialist said tests would be needed to confirm both diagnoses. To top all this off she emphasized that my inflammatory and thrombotic disorders precluded any sort of treatment for POTS.

By this point years had past from my initial diagnosis of a serious, systemic autoimmune disorder. I’d spent countless weeks in hospital, hooked up to IV lines and was injecting medication three times a day at home just to stay alive. Regardless something had failed to register. I closed my eyes when the specialist finished talking and said to her, “I’m never going to get any better than this, am I?” to which she simply replied “No, you won’t.” She went on to explain how POTS and Ehlers-Danlos syndrome become deregulated by inflammation, bed rest, blood clots, fevers, infections, the list went on and on. Interestingly both syndromes can also become deregulated without any reason, and they are progressive rather than static anyway. So in effect every single time I would get a symptom from any one of my inflammatory disorders, these two conditions would worsen. They would also deteriorate by themselves over time, causing increasing complications.

This was a cruel exchange in some ways, obliterating all hope. In other ways it was one of the most liberating conversations I’ve had in this journey. If there was no hope of recovery, a hope that through the years had been close enough to dream of but never touch, then there was immense hope in beginning again. If I couldn’t get better medically and the only way forward was downhill, then I could get better at adapting to my reality, at testing my limitations and in ensuring a constant thirst for beginning anew.

Years have passed since that conversation — years laden with more complications, deteriorations and medical emergencies. And yet without fail when I hit a medical rock bottom, I close my eyes and remember that exchange. Then I take a deep breath and begin again.

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The Significance of Taking a Walk With Chronic Illness

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Sometimes, our own minds can be our very worst enemy. Between self-doubt and a lack of self-confidence, an anxiety-ridden mind can talk us out of just about anything. Even when things appear to be fine, our mind can have a wonderful way of making us think that things are not fine. For those of you who struggle with anxiety, you know this cycle all too well.

The other day, I was really feeling the pressure of life. Even though there are a lot of positives in my life, I found it difficult to focus on them. My mind was playing tricks on me, making me think I did not deserve to have a good day, to feel good about myself, or to use my skills to empower others. I mean, who did I think I was? Who did I think I could be? Even though I have experience in many things I do, was it really enough?

During this time, I could feel my anxiety rising, my heart racing, and my mind running away with itself. Before I knew it, I had convinced myself to run… just run away from everything, including my own mind. Sometimes when you work from home, it’s easy to climb back in bed, throw the covers over your face, and pretend the world doesn’t exist. When this happens to me, I usually give in to this notion and hide. I hide myself from the world, take some time to breathe, and then continue on with my day when I’m ready. But for this particular day, I decided to do something different.

I decided to walk. Even though exercise was the very last thing I wanted to do, I somehow looked at my dog, who so desperately wanted some attention from me, grabbed her leash, threw on some shoes and practically shoved myself out the door. This was the first time I hadn’t given into temptation and just gone to bed. I pushed myself out of my comfort zone and took a walk. Some of you may be thinking, so what? It was just a walk. Just a walk? Oh my, dear friend. It was so much more.

For the past year, I have struggled with many ups and downs, mostly located only in my own mind. Yeah, life happens and not every day is rainbows and ice cream, but for the most part, this year has not really been a bad one. My mind, however, will tell you something different entirely. I’ve been sick… all year. Heck, I’ve been sick for the past three years. Autoimmune disease has taken over my life. And most of the time, my mind allows that to become an excuse. Oh, you shouldn’t work out. It’s OK. You’re sick. You don’t feel well. You’re tired. You deserve some rest. Maybe tomorrow. Yeah, that’s it. Start tomorrow.

And you know what? That “tomorrow” has been happening all year. It is now February. The year of 2016 has been here and is gone. How many days of “tomorrow” is that? Do some math. And even though my mind is half right and too much exercise can have adverse effects on autoimmune symptoms, my mind is also wrong. Short amounts of exercise has proven to help those with autoimmune conditions live more fulfilling lives. Why? Because it gets you moving. It gets your heart pumping, your muscles working, and your mind thinking. It helps you as a person feel more confident about that very body that is attacking itself each and every day. It can empower you to feel… to feel anything but pain.

So, I walked. And you know what? It was great! I finally took some time to enjoy my dog, to enjoy the exuberance I felt just for doing something relaxing for a change, and to gain some perspective on my surroundings. I stopped to take pictures of flowers, to breathe in the country air that surrounds my home, and to thank God for this life I have. I may have a life of challenges. I may struggle sometimes and feel depressed. But I will never allow it to break me. I can change my own perspective of how I view autoimmune problems. I can stop allowing myself to provide excuses. I can exercise and eat healthier if that’s what I want and/or need to do. All I need is to be my own best friend instead of my own worst enemy.

And you can do this too. Figure out what you can control. Is it hard? Heck yes! Living with any type of physical or mental challenge is tough. It is not easy. But you can truly help change how you feel each day by changing your attitude towards the very thing that’s dragging you down. Learn how to inspire others. Show other people how you push through your challenges each and every day just to feel a little bit better. Show others these conditions will not bring you down.

Walk for those who can’t. Run for those who feel like it’s impossible. And sweat for those who are lost and need just a glimpse of the positives exercise and health can bring to one’s life. Learn how to motivate others by sharing your story, and be darn proud of it too. So, the next time you’d like to run… walk instead.

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