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activity

a view of a woman from the shoulders up , seen from behind, cradling her head in her hands

A Day Out with Chronic Illness: the Aftermath

Gone are the times when the only consequence of a day out was the possible dent in my bank balance and the hangover I was likely to get from some adult beverages. Ah, I remember fondly the times of an impromptu day out with friends into the city or heading off for adventures in the car; these are now a distant memory. Nowadays, since my chronic illness showed up in my life, the consequences of a day out are a lot more than worrying about my bank balance. There’s the sheer exhaustion and pain, the social anxiety, and so much more that has to be considered before agreeing to a day or night out.

Before The Fun Begins

Since my illness began, days out take a whole lot of planning and preparation. I need to know where I am going and who will be with us. Recently I went into Edinburgh during the fringe festival to see the ladyboys of Bangkok. I do this every year; it’s become a little tradition that I do with my mum. In the run up to the day I try to make sure I do as little as possible in the attempt to make sure I’m not too sore or fatigued to go out. I’m sure that many of you know that with our various chronic illnesses our intentions don’t always work out according to plan. There have been times where I’ve been too sore, tired, or anxious to go on a day out. This year the days running up to the show were a little busier than normal with family events. We had a wedding on Saturday which in itself used a lot of energy, but thanks to my husband I was able to rest on Sunday. Thankfully on Monday (the day of the show) I was feeling okay and was really looking forward to it.

We went into Edinburgh in late afternoon. Normally we get taxis from the train station to the venue, but this year we decided to walk as it wasn’t too far. We met the others from our group, had a bite to eat, and watched the show where we sang and chair danced along. During the show I could feel myself getting a bit a little uncomfortable (after walking to the venue and sitting on uncomfortable seats for an hour and a half) but my mood and energy was hyped by the atmosphere and the music. We walked back to the train station where we had to wait nearly an hour for our train home. As we waited I could feel my body starting to seize up with stiffness and a wave of fatigue washed over me. I so desperately wanted to be at home in my comfy clothes snuggled up under my duvet.

The Aftermath

The following day, after a very restless night, I woke up feeling terrible!! I was so stiff and sore. Walking was so difficult that if I wasn’t so sore I might have had a good old chuckle at myself. My energy levels were so low I felt like a zombie. I told myself that such a great time was worth all this pain and discomfort and that I would be okay in a day or so. I expected a certain level of pain and fatigue. That’s what comes from having this illness for so long. I knew that I would have to be kind to myself and take it easy for a few days. Not always easy to do with a toddler who is constantly on the go and climbing all over me but I made sure that he had things to do, I made myself comfy on the sofa and waited for the pain to ease off a bit.

It didn’t ease off though. By the second or third day I knew that the consequence of having gone into Edinburgh, having fun and all the walking, was going to be a flare up. I knew that I was in for a tough time. I wasn’t able to get comfortable. Nothing was helping to take the edge of the pain. I was miserable. I swore that I would never make plans or leave the house again.

No Longer A Hermit

Thankfully I came to my senses and haven’t shut myself away from the world. I am however still flaring. Is it from going to Edinburgh? Possibly not, as there are other things happening in my life, but I’m still not feeling like my normal self. I’ve reached that point in this vicious cycle where I realise that I cannot lock myself up and not do anything. I need to remind myself that if and when I do have plans to not over do it, not to rush here, there, and everywhere, and to be prepared for some consequences because the memories made are worth it. As chargies, the price we pay for such things is greater but I know from my own experience that I need to find a way to truly live my life and not just exist. If that means once in a while I’m left feeling like the tinman who needs his joints oiled then so be it.

About the Author

Nicola Ogsten is a blogger who writes about chronic illness, disability, and parenting. She lives in central Scotland and is trying to share her chronic illness journey with the world.

September 19, 2018 0 comment

Diet Illnesses Severe Hypertension Spoonie Tips

5 Healthy Habits for Persons with Chronic Diseases

written by TheUnchargeables

Lifestyle issues cause some chronic diseases.

There is a high tendency for people not to exercise as much, paving the way to obesity, due to unhealthy food consuming that lead to illnesses like diabetes, heart disease, cancer, strokes, and much more that we are not even aware they exist. Ever heard of Chiari Malformation, Ehler Danlos Syndrome, and Myasthenia Gravis? These are chronic diseases, fancy, right? Mine is Mitral Valve Regurgitation and Stage 2 Hypertension (severe hypertension). Consider a lifestyle modification. Only 5 Healthy Habits to follow.

What if you are diagnosed with a chronic illness?

The issue with lifestyle is that they are difficult to turn into action. Many people attempt a change in their lifestyle all at once, which is tough to accomplish. The result? Often, they give up all of the right paths and resort to the usual negative health habits that they had been doing long before they have even tasted a healthy lifestyle.

Often, it just takes a few days or a few lucky weeks of trying to be healthy before the individual becomes overwhelmed and stops living healthy. Exercising stops and back they go to eating processed foods and junk foods; these are the very reasons to change your health habits one habit at a time so that you don’t become overwhelmed and stop trying to be healthy altogether, after all, a person with a chronic illness can only do so much.

Most weight loss programs available today only work if they are done carefully and don’t deprive the individual too much. The same goes for exercise programs. If you choose an exercise that you will likely enjoy or increase your physical activity more gradually, do stick to it so that you don’t become discouraged and quit using altogether. The trick to healthy living is to begin slowly.

If you try any modern diet or fitness fad with gusto, your body will likely respond negatively, sticking with these programs will be tough. There are a few simple things you can do to live a happier and healthier life.

Try these five changes to winning healthy habits a la Chronic Illness Warrior:

1. A must: eat one healthy meal daily.

Even if you are a fan of processed foods, do not deprive yourself of a healthy food each day. Feed your body with proper nutrition and healthy proteins. Healthy meals consist of mainly fruits and vegetables, supplemented with whole grain products, and lean meats. It doesn’t matter how much you eat, if the food is healthy for you, it won’t usually contain a lot of calories and won’t cause weight gain as can be evident when you eat junk foods or highly processed foods. Even so, you should try to watch your portion sizes.

2. Drink up: take one glass of water before each meal.

Water is by far the best liquid to drink. When you decide to drink a glass of water before meals, (an 8-ounce glass is enough), you will feel fuller before eating, and you won’t eat as much at the meal that follows a drink of water.

3. Have some activity at lunch.

Given you have 30minutes of Lunch Break, it usually doesn’t take that long to eat your meals. Eat your meals, and have the time to exercise. An extreme workout is not necessary, especially for a Spoonie; a simple walk will do. Being active will not only give you a boost, but it is also an aid to burning off the calories you just ate and will help in the digestive process. It doesn’t matter what type of exercise you want to do as long as you choose reasonable one without overdoing it. A Spoonie may be unchargeable, but inactivity weakens a person even more.

4. Have a replacement bar for a meal.

This step will include eating a protein bar as a snack instead of junk foods. Most meal replacement bars are healthy enough; they contain proper nutrition and lots of fiber, and they are also not calorie-rich as you think. They help stave off hunger pangs in a typical mid-afternoon time. Keep a stash of these protein bars wherever you are, in your desk at work or in your purse or briefcase easily available when hunger strikes you. It will help you from spending on poor food choices found in vending machines. Try a meal replacement bar that is high in fiber, and that has at least 10 to 15 grams of protein per bar.

5. Exercise, always.

With or without an illness, exercise at least 3-4 times per week. Choose activities you will enjoy while keeping it at a minimum; doing so will help energize you, build muscle mass, and help you lose weight by burning off excess calories. Yoga, perhaps (the perfect Spoonie exercise)?

So, what am I, er, what are you waiting for!? Let’s do this!

December 10, 2016 0 comment