Tag Archives: chronic fatigue

Ten things to make vacations possible with Chronic illness

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Ten things to make vacations possible with Chronic illness

I can’t go on vacation. I could never keep up. I can’t slow my family down. It would take weeks to recover.

I hear this all the time when I tell other chronically sick people I went on vacation. I am here to tell you it is possible. It takes planning. It takes determination but it is possible. The last three years we have been doing a camping trip to Disney, here is what I have learned.

  1. Plan it out

 I am not talking about the little things. I am talking about generalizations here. We leave on one day, set up camp. We go to the park the next day. We hang around camp/pool the next day. The last day we pack up and go home. I am not slowing anyone down this way. We all need time to recover and relax after the park. This also includes increasing exercise. I started this about three weeks before we left. THREE. WEEKS. Planning helped me plan in rest/recovery time. I planned out what I was bringing with me to help my body hold up. I planned out where the jacuzzi’s were to help my muscles recover a bit. I started cutting back on soda and increasing water three weeks prior to leaving as well. Taking your body on vacation it needs to be well hydrated before you even start.

2.Eat anti-inflamatory foods before leaving

Before we left I made sure to stock up on anti-inflamatory foods. Cucumbers, celery, pineapple, and ginger. I cut back on pasta and white rice. I made sure I was eating foods high in Omega three’s.This is not far from what I normally eat but, I tried to be extra vigilant about these things. I severely limited my sugar intake as well. Sugar causes inflamation on so many levels.

3.Sleep

I would say the three days prior to leaving I was super protective of sleep time. I tried to fall asleep close to the same time every night. I get that sleep is hard. Good sleep is even harder. This is where I pulled out all my tricks. Melatonin, cherry juice and magnesium.

4.Supplements

So if you follow me pretty regular you probably know what I am going to say here. Ultracur. Yes, I took it on my vacation. I did not take aspirin, aleve, or any other nsaid. It was not however the only supplement I took. I was also taking a flaxseed oil supplement three times a day. I took the ultracur four times a day. I took L-lysine two times a day. I use a Stomach enzyme and probiotic mix that I took twice a day. I also took a ginger supplement twice a day. It has taken me at least three years to figure out which supplements give me the most help. I can’t afford to take them all the time, plus I already take enough pills. I also highly believe that you should space these out.They should not be something you take daily all the time. I have found it to be more effective that way. I know others have not. This is where you have to really know your body and really take the time to find out what works for you. Briefly I will explain why I take each of theses. Ultracur which is Curcumin the helpful property in Turmeric is basically a coverall. There is hardly an area it doesn’t help. It is anti-inflamatory, anti-microbial and anti-fungal,works for the skin, the brain and the digestive tract.  I use the ginger mostly for help with muscle pain although it is good for many other issues as well. Flaxseed for joint lube. L-lysine is for membrane health. Originally I started taking it for coldsores but found my muscles really really like it when I take that. I kind of think the stomach enzymes and probiotics are self explanatory. They make my stomach and gut muscles happy. I am all about making my muscles and joints as happy as possible. I have tried glucosamin condroitin and really could not decern a noticable difference. I know some swear by it.

5. Spread it out

This somewhat goes in with planning, but not exclusively. For me I don’t mind not getting to all of the park, for others that might be an issue. There are two ways around this, plan more than one trip, or more than one park day. FOr me that would require extending our stay and I know my body and it is not up to that. I am pretty determined to camp because I love it so much. I used to hike and camp. That is really hard and I know I can’t do that. I can’t carry a sixty pound backpack and hike. This is my compromise with myself, that also allows me to give my daughter the experience of camping. Perhaps it is not important to you and you are good with a hotel. DO what your body can handle.

6.Eat to keep up

Protein protein protein. We all know that you need protein for your muscles after you exercises. Sometimes it is easy to not think of walking around a park as actual exercise. It is essentially what you are doing though. Eat high protein and low sugar while at the park as much as possible. However, that being said, you are on vacation so indulgences are allowed. Disney made it pretty easy to eat a balanced meal at every meal. Breakfast even had veggies available. This is where paying attention to serving size mattered most to me. Protein was the main part of my plate with room for fruit and veggies and a small space for carbs and sweets.  Don’t forget to keep hydrating. Drink a lot of water, when you think you have drank enough ,drink a bit more. By eleven am I had already drank sixty ounces of water. It sounds like a lot. Sure it made me go to the bathroom a lot. A lot. Factor in it is also summer in Florida. Sweat was dripping off us when it wasn’t raining. This is where I would also say powerade or gatorade are acceptable choices of hydration. I personally can’t stand coconut water but it is also an excellent hydrator. Don’t swear off all sugar and caffiene. They can be helpful tools to help you last all day. I tried to make sure the water I drank was twice as much as any amount of caffiene/sugar I had at each meal. Use the sugar/caffiene high to your advantage.

7.Rest frequently

Sit where and when you can. Sometimes it hurts worse to even try to sit down. I know I get that way too. However, your body needs it. Try to remember to stretch when you sit. I will be honest here and say I didn’t always remember that. There where times that sitting felt a lot like what the tin man most look like trying to sit. Keeping an eye out for oppurtunities for me to sit down really helped though. Even though I was tired, I made sure we got jacuzzi time in. There was one day I used it twice for the full fifteen minutes each time.

8.Allow indulgences

Normally I try to keep desserts and treats to a minimum. I know it doesn’t always seem like that and I am not always good at it. Remember though, this is vacation. Aside from knowingly consuming corn(an allergen for me) I let myself have desserts and other things, High carbs, I normally wouldn’t.  I had bread with breakfast and lunch and dinner most of the time. We had sweets and I sure did drink a lot of juice.

9.Keep hydrating

The last two years the week after hit me pretty hard. It took me a while to realize I had slacked off on hydrating. I wasn’t outside sweating any more. It is easy to forget to hydrate. Just like it is going to take more out of us to do the vacation, it takes a lot to recover. Hydrating is going to make that easier. Your muscles will thank you.

10. Allow for rest afterwards

This year I did not allow for full days of rest. I have found that to actually bring on a flare worse. Instead I planned short small activites with lots of rest afterwards. The first full day back I did my cleaning job and then we rested. A friend and I took my daughter to the beach. Which was perfect because I could rest knowing my friend had an eye on the kid. The salt water also really does help. If you are not near a beach plan on epsom salt baths. I still used those on top of the beach. Be gentle with yourself. I know this is a hard one for me too. I was starting to get discouraged I wasn’t back to normal by friday which was a week after we left. Pushing at it though is not going to help. I don’t really feel like I am fully recovered even now. I don’t expect to start that rise back to my “normal” level of everything until Tuesday night or even possibly Wednesday.

Remember this is after three years of almost the same exact trip to learn this for my body. After the first year I put in the extra day to relax before coming home because I paid for not having it the first year.  The only other thing that changed was which park we went to.

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The truth about flares

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I often get accused of being a chronic complainer.I don’t post how i feel for sympathy. Sometimes just seeing it in black and white helps me.  I just need to vomit it all out so I can move on. Its cathartic. This is not to say I don’t appreciate the comments.

Chronic illness is an asshole. Sometimes it makes me seem like an asshole. Most of the time in a flare I feel like I am being an asshole.
When I am resting I still feel like I am being lazy. I still think you are thinking I am being lazy. You can tell me all you want that you are not. When I have to cancel plans there is a part of me that feels I am just making an excuse. I know, if I went the pain would magnify. I know it.

Chronic illness makes your anxiety triple. Anxiety is an asshole too. Anxiety over what I do get done in a day. Anxiety over what I don’t get done in a day. Anxiety over what others are thinking about what I did today. Anxiety often makes me feel like I am being a complete wimp.
I feel ridiculous saying my skin hurts. Or any other body part that is acting up.
I feel like it’s an excuse even when I know the pain is too much to push through.Dishes have to get done ,I know that. It would seem standing doing dishes should be no big deal. Standing is a lot more work then we realize. There is a reason it takes babies so long to learn. There is a reason they get tired easily from it. If I do push myself my hips,knees and ankles blossom into painful bursts. If I keep pushing my hands will start to cramp up.  Have you ever tried to wash a plate and had your hand cramp. Most times I break the plate. It would make sense to stop doing the dishes before that happens. That is the thing though, the frustration, you don’t want to stop.

I am just as frustrated about my body flaring as you are, if not more. My brain is still functioning and often going a thousand miles a minute. I am thinking of all the things I need to get done. The things I should be doing. It is even more frustrating to feel somewhat okay while laying down yet, within five minutes of being up doing things, you are exhausted and often shaking.

I have a tendency to emotionally eat. Yes I know I shouldn’t eat that but sometimes emotions need to be fed. I do try very hard to balance my emotional eating with healthy eating. I do aim for that balance. I know full well I will pay for it later. Sometimes I feel it is worth it. Sometimes later when I am paying for it, I think I was being stupid. Just because I ate it yesterday or last week or last month doesn’t mean I can eat it during a flare. I could have eaten it yesterday and today it makes me want to vomit. I could have had it at lunch and my stomach tolerated it just fine. Eating it with dinner, not so much. It can be as small as garlic or lemon or as big as chicken. There is often no rhyme or reason to it.

So there it is the cold hard truth about flares and complaining.

Ebb and flow of parenting with chronic illness

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One thing that eludes me is consistency. Some of that is A.D.D., some of that is just life.  Chronic illness doesn’t really allow for consistency. It is super annoying.  It bleeds over into parenting. When my illnesses are flaring or acting up, I tend to slack off on parenting. I know I do this.I hate it.  I dislike how much TV she watches while I lay in bed. It takes energy I just do not have, to keep on top of her.  I want to always be that mom who is fully involved and happily multi tasking making dinner while the kid is doing homework. It is just not realistic for this to be happening daily though.

This morning  Actually it started the night before, we did homework for hours. Why hours? Because I was resting. She was supposed to be sitting at the table doing her homework. I could hear when she got off task. I made sure to point it out to her. When she was crying for like the fourth time I told her to pack it up. We would finish it in the morning. She is a horribly early morning child  anyway so why not. This lead her getting up an hour earlier than normal,because she was worried about not having enough time.  Between slurping coffee and getting really frustrated she is not focusing. The guilt starts. The guilt that I should have been more on top of this. I should have. I should have. I should have.  This is what goes through my head. I know on one hand, that I could have done things differently. Then again, she is nine. She is old enough to be responsible for her homework.

It’s not like I don’t know it’s coming. It’s not like I don’t know its due. It is more like, It just gets set aside in the hurry of every day. We set it aside because this came up or that came up. We set it aside because I am not feeling well,  we will do it tomorrow. I will feel better tomorrow because I rested today and I am going to take it easy tomorrow. That by the way never actually happens.  Then suddenly it is due tomorrow.

We get her homework packet Thursday after school. We pour over it like it’s the newest gossip magazine. Look how many pages of math! Oh, look you get to do this! I have an idea for that! We really do plan on tackling it. Thursday we are good about filling in her reading log, including the summary of what she read. We mark down what flashcards she did in Math. Friday, we normally have a family treat. However on the way there I normally make her read her book. There is a fifty-fifty chance it will get written down when we get home.   Saturday, sometime after I arise from the abyss of sleep, around eight am I look at her homework packet. We might even tackle some of it.  Then the outside is calling because it is fall in Florida. It is splendid weather outside. Not cold, not hot, windy but not windy to make it miserable.  In other-words, paradise. Sunday morning is out because church. The next thing I know its Monday. When I pick her up it’s all gusto. We are going to get it done. She reads. She does math. I am knee-deep in making dinner.  “Yeah I don’t care what you do. OUT of the Kitchen!” We have tomorrow. We will knock it out tomorrow. You get the picture.

Sometimes at the end of the day, I think “yup, nailed it today.” I got work done. I got the kid fed,to school-fed and in bed. I took time for me. Go Me! Then there are other days that at the end of the day. I think : ” Well breathing was really hard today.”

I think sometimes us chronic illness sufferers give the wrong impression about flares. Sometimes, it really is a flare and we never even saw it coming. We went to bed. We woke up having a new sympathy with road-kill. Most of the time though, it is not like that. I have weeks where I really feel on top of it. I have medicated at all the right times. I haven’t pushed the limits too far. I have eaten healthy and slept decent and taken personal time. Then it slowly starts off. By slowly I mean like from one day to the next. It just slowly one thing after another stops working. The medications are not as effective. I have more muscle aches than joint aches but I am still treating for the joint aches. Maybe what I did one week didn’t push the limits, so I do it again the following week. Uh oh. Limits reached and exceeded. What? I just did that!  I ran later than expected grocery shopping or cleaning so I had less me time in the car waiting to pick her up. It just slowly builds. Those kinds of flares are easier to recover from. It is like a light goes on and I am able to fix things. I start medicating  right. I give a little extra self-care. The times that it just WHAM! BAM! No thank you Ma’am. Those times we dread because so much of the time, we have to wait it out.  I can try to medicate. I can try to listen to my body and see if there is some craving it has. Most of the time, it is waiting though.

How do you parent when you feel like that? How do you parent when it’s not consistent?

You learn to go with the ebb and flow of your illness’. You learn to ebb and flow parenting. You learn to take advantage of when you do feel good.

I am still working on it.

No one asked you paranoia anxiety!

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Okay so technically there is no such thing as paranoia anxiety.  They are two separate conditions. It feels the same though. Anxiety can mimic paranoia in a lot of ways.

Anxiety often has you thinking very negative thoughts and sometimes even believing the negative thoughts. Paranoia you can’t see that its a delusion. No amount of therapy can help you see that lie.  So I know, after years of therapy, that it is in fact just anxiety.

I really hate though when it gets that severe. I start wondering if other people are reading my text messages. I have not left my phone anywhere. Then a voice in the back of my head says, “oh but they have technology that allows that.”  When its really bad I can get sucked into that and really disconnect from people. This normally leads to a depression. Luckily last night I was able to recognize it for what it was. I listened to some meditation, made fun of it and tried to move on.  It is not as easy as that makes it sound. It took years in therapy and wanting to move past these hurdles. I read books about retraining your brain. I use meditation to help me focus on positive thoughts. Positive thoughts help drowned out the anxiety.

No matter how good the medication combo is, no matter how much therapy, its always going to be there. I just have to remember that. I have to remember that its not always because of something I did. I wasn’t eating as healthy, sleeping as much, or whatever. I know my triggers. I know I hit some of them on our vacation. It took a lot last night to be able to make fun of it. It took a lot to pull out my toolbox for fighting anxiety. Sometimes I tell myself to just go through the motions. Somewhere along the lines, it does actually start to help.

It’s not completely gone today, but it is better. Writing helps. I will also probably go through our vacation photos and edit some. It always makes me happy. I will only have positive shows on today. Things like food network or something similar. This is opposed to my normal Law and Order or Criminal shows. They are too negative to watch with anxiety flaring. I will make it a point to go outside when the dog needs to go. Sunshine really does help. Even just five minutes outside can be so helpful.  The other thing I will make sure to do today is hydrate.  I have been drinking some soda but I will counter it with water. For every oz of soda I drink I plan on drinking two oz of water. If I could get past the fatigue from our vacation without caffeine I would. Well honestly I would try.  I doubt I would succeed at that.

The real cost of being sick

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 There is so much more to chronic illness expenses than doctors appointments, tests, and prescriptions. Those are the more obvious expenses. Those are costs that you can control to a certain extent with the type of health insurance  you have. These are some of the less obvious costs…

Lets start with diet.  I don’t mean the kind of diet you go on when you want to lose weight. I mean the kind of diet that completely changes how you eat. I won’t say that I avoid trigger foods altogether–I am human. I know [emotional? you just said “eating” which is good!] eating it is not the best idea, but sometimes it’s emotional therapy.

Many times the prescriptions that people with chronic illness take can cause digestion and gastrointestinal  issues as well. What that means for me is I can not rely on a good quality multivitamin to catch any lapse in diet. A good quality highly absorbable multivitamin can cost fifteen dollars or more per month.

The reality is fresh fruits and vegetables cost almost twice as much as canned or frozen fruit. Why is this an issue? Well this ties into the digestion issues. Many people with chronic illness cannot process the additives, extra sugar, processed sugar, and preservatives as well. This makes canned and frozen fruits not the best choice. I am not saying I never get these but its not my preferred choice, and I always have more issues after eating these foods.  I am lucky in my diet the only issues I have are preservatives, additives, lactose and corn.  This still makes it difficult, it could be so much worse.

While my family normally tend to be fairly healthy eating to begin with even before I got sick, it’s not even a choice now. It is how we have to live.  This is not necessarily a bad thing, just another hidden cost people don’t think about. I did do about six weeks of juicing with fresh fruits and veggies. It worked really well, and I did feel better. It cost me  about forty dollars a week. When it came down to it, I had to start focusing on making sure my family had enough groceries for the week and not just enough to juice.  Its great to juice or make smoothies, but I still have to feed my family.

Next we have what I like to call my toolbox. A list of things that you can do to help alleviate some of the chronic pain that goes along with chronic illness. Oh just take an Epsom salt bath every night. I use Icy hot and love it. Pick up some Tiger Balm. Pain patches, supplements, and exercise are what helps me.  It is one thing to say that but here is the hidden cost.  To be effective you need to use at least a cup of Epsom salt per bath, while recommended amount is two. At one point in order to take a just plain Epsom salt bath every night I was paying roughly fifteen dollars for salt each week.  This is just plain epsom salts. This was not for the ones that have added benefits of lavender or menthol or eucalyptus, rosemary or ginger added to them.  Not to mention its not like I can just jump into the bath tub any old time I need to.

Then you also pick up a variation of rubs, creams, and ointments. Each of these run from as cheap as five dollars up to twenty  bucks each. Since we often use them multiple times daily, we might get a week or two out of a tube or bottle–if we are lucky. Pain patches, however wonderful they are, are one short use and they are done. Five dollars for five patches that if you stretch it can last you four days. It gets to a point that you can easily be spending fifty to sixty dollars a month on these kinds of things.

There are some more natural remedies that you can take to help bolster the prescriptions that often you have to take. I have gone off a lot of prescription medications and have gotten down to my bare essentials so to speak. My bare essential prescription cost is about  [$150] {or} [One hundred fifty] every three months.  It was almost that a month at one point in time.

It is easy to say “go pick up a supplement.” Looking at quality matters a lot here. Turmeric, which is great for chronic pain, is a minimum of ten dollars for a month supply. Then often people in chronic pain use Magnesium which can be relatively cheap, again the type and quality counts here. The one I have had the best success with is fifteen dollars a month. I use a strong omega three supplement as I have both heart issues and mental health issues, and that helps with both.  I also take Melatonin as opposed to a prescription sleeping aid.  It is not hard for me to spend fifty dollars or more on supplements [a month? how long?]. Fifty dollars is where I am at right now with just the basic cannot-do-without supplements.

This is really just the first layer of unseen costs of being chronically ill.  This is not even taking into consideration that the kind of mattress you sleep on matters, keeping shoes fresh and supportive by changing them out every three to six months.

This does not even take into consideration that people that have chronic illnesses tend to not be able to work but yet not meet the terms for disability through the government.  I am lucky I have decent insurance and my costs are low comparatively speaking. Shockingly enough, to many the answer is not through medicaid, I actually paid more and struggled more going through the medicaid system.  The stress the system puts you through to jump through the hoops to get what you need……it’s unbelievable.  Even with the good insurance we have now my out of pocket expenses are anywhere from 100-150 a month. This is not including prescriptions that are significantly cheaper with insurance.  This is what I have it boiled down to as essentials. It could easily be twice that.

I often deal with people who are very flippant about my chronic issues because they are not visible nor are they the same from day-to-day.  To date my diagnoses are: Myofascial Pain Syndrome; Chronic Fatigue Syndrome; Fibromyalgia; Degenerative Disc Disease of cervical, thoracic , and lumbar spine; Irritable Bowl Syndrome triggered by a corn intolerance; Supra-Ventricular Tachycardia;  Raynauds; malabsorption of Vitamin D, Potassium, and Magnesium; severe outdoor allergies which borders on allergic asthma; OCD with tendrils of ADD.

I don’t look sick. I don’t like to talk about being sick or what I can or can’t do. If I am discussing it in detail with you, I trust you a lot.  I am not willing to continually prove my conditions to people over and over. What would I do to do that? Carry X-rays and MRI reports and blood test results around with me constantly? I am not being lazy or taking the easy way out and yes I can read that in your eyes. After dealing with Doctor after Doctor after Doctor who did not believe me, I can tell exactly who does and doesn’t believe me. Some of the disbelief comes because I was super active and really did a lot one day. The next day it takes everything I have to get out of bed. I am paying for being so active. When you have a kid, you tend to push yourself to do more, for them.

I have gone through the disability process with the government. Essentially they believe I have the issues I have but because I can parent to some extent and function to some extent, I am not disabled. What I was doing when I was working and trying to parent was not functioning.  I was a mess. I could not enjoy any time with my daughter. I focused on getting through the day til I could medicate and hopefully sleep. I had no quality of life, not to mention the immense damage to my organs that the prescriptions were doing. It has taken two years off of three medications to get my liver and kidney functions to somewhat normal levels. TWO YEARS.

It has been a long hard road to get my health back to some extent.  We are lucky that we have family and close  friends who understand and help us. We are functioning, barely, at a fourth of what we were earning when both of us worked full time, and this is with my husband working two jobs to help support us. If anything ever happened and he could not work, we would be completely screwed.

************************************** some exciting news in store***********************************************************

 

Below is a brief outline of the campaign, which illustrates what we’re trying to achieve and how people living with chronic conditions can help.

 

Via the “Hidden Cost of Chronic Illness” campaign, Debt Advisory Centre aims to raise awareness and visibility of the challenges faced by those living with chronic and ‘invisible’ conditions. We’re also conducting our own research into perceptions of chronic illness, especially in relation to the work environment.

 

 

We’d like to know the following about the patients that use your services;

 

  • How long they’ve had their condition.
  • What their specific condition is.
  • How it affects them (professionally, socially, emotionally)
  • What things they have to purchase in relation to their condition.
  • What other financial disadvantages they face.
  • Roughly how much they spend per month in relation to their condition.
  • How they feel others perceive their condition (employers, friends, strangers)

We’re keen to gather as much user-generated content as possible and welcome contributions via email and video.

 

Once we’ve gathered the information, we’ll combine it with research we’ve conducted ourselves and research supplied by other organisations ourselves. We’ll then be distributing and sharing those findings with the media.

 

Patients can find out more by visiting the campaign page http://www.debtadvisorycentre.co.uk/advice/Illness-and-Debt-What-are-the-Hidden-Costs-of-Chronic-Illness-0-4163-0.html

 

Please note, if you aren’t already aware, that Debt Advisory Centre is a fee-charging debt solutions provider and not a charity.

 

The precarious state of my sanity, aka week five summer break

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One month down, I am over it. Already. I just want to sleep. I am over the running here and there. I am over the heat. So so so over the heat. I enjoy spending time with my daughter. Really I do. I also enjoy just having Mommy time. Summertime does not equal enough Mommy time. I am again finding myself in need of remembering to keep it balanced. She does not have to be entertained every second.

I have dealt with more flares than I expected. We had more roadblocks than I expected. I always feel like I did something to cause the flare. I let my guard down somehow. I spend so much time reviewing what I have and have not been doing to keep myself at the same level. Have I been resting enough? What about my diet? Have I been active enough? On one hand I know its more of a balance thing and its not possible to keep it in balance always.  Flares are gonna happen no matter what.  I also know I have a tendency to push when I know I am starting a flare. It works for me sometimes, when the kid is in school. It is not working for me with her here. I even added back in almost nightly baths in Epsom salt with menthol and lavender.

I am trying to remember I need to be patient with myself as much as I do with the kid. I knew I would flare. I guess I just forgot how badly I could flare. If that makes any sense at all.So here is what we did accomplish:

Sunday June 29th

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A very mentally stimulating sermon on Sunday. We are lucky to have the talented Barbara G Walker in our congregation. I love when I am intellectually stimulated to learn more on the subject! All in all a very relaxing and enjoyable day.

Monday June 30th

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Monday we walked to my cleaning job. Well I walked she rode her bike. She is getting really good at it. She lost TV and computer privileges so she had to read the whole hour and half of my cleaning. As you can see it was tough.  Neeka loves it though.

We also found this chair for the kid. No we did not buy it. It was some ridiculous price and space is at a premium here. We did however take a picture. It lasts longer that way.

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Spritzers were my thing when I was pregnant with her. She thinks she has a soda.  Little bit tricky mom right there.

Tuesday July 1st

We spent the morning doing Math and reading and we skipped writing in favor of sewing her purse. A light lunch and we were off to a library class.  We car pooled with Princess P and family as the one we went to is ….a bit creepy. There is a large homeless population that congregates around the library. We used to go to this one a lot. It is kinda far away though and there are several nicer ones closer. The wonderful world of invertebrates, so interesting! Starfish are now called Sea stars because they are not really fish. Whatever, Patrick will always be a starfish to me.  There was even a hermit crab……race.  The marine biologist was great and stressed the importance of conservation. He gathers all his specimens from the sea and returns them after the class.  So even he didn’t know how the races would go.

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Princess P was more interested in exploring so I took her out to read and explore. It was a real hardship to spend some quality quiet time with her, let me tell you. The lap sitting, the little hands, the kisses, and yes even the sassy.

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Wednesday July 2nd

The same marine biologist had a class at a different library. He said it would be the same content but that each class is customized to what the kids were interested in. The kid was a bit more willing to touch things at this class , there were a few new preserved animals and live animals. This one we also heard a story about tides and there was a discussion about tides, how they work, how far apart they are, why they are good.

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Another hermit crab race with new hermit crabs. This time they raced across the US….however the oceans were a big draw! lol.

Thursday July 3rd

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Math tutor lesson .. Daddy sat in on this one for the beginning while Mommy snuck out for breakfast with a friend. We did our hour of reading , an a writing prompt. Then we just took the rest of the day off. The  storm passing through is really messing with me. I know I am on the outskirts of this flare and I really want to rest but I also suspect the amount I have been resting is also messing with my sleep at night as I have not slept well the past two nights.  This is a chronic illness rock and a hard place.

Friday July 4th

This year we were really popular and got three invitations to fourth BBQ’s. We were going to go to Princess P’s house however without a car, transportation is an issue. Instead we went to a friend’s house who is much closer.Much more exciting though was that we found our new car! That will probably have it’s own blog post though because I am that excited about it. Here is a sneak peak though

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We had a great dinner…..

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We went downtown and parked the car , we then walked to get Gelatto and then down to the beach.

It was nothing short of gorgeous.

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It took three weeks or better but I finally got to the beach again! Hopefully now that we have a car we can go more often as originally planned.

Saturday July 5th

Today is all about recovering. I have not even gotten out of my pj’s. I have not had coffee. I don’t want to wake up. I have not had the tv on.  I am paying the price for not only being so active yesterday but also my diet choices yesterday. The bathroom and I have spent  a lot of quality time together. I doubt I will even get dressed today let alone get out of bed for more than a few minutes. Medication , possibly a bath and lots of water are on the menu today.  My stress level and even my conscientiousness level will go down dramatically as the kid will be off to a sleep over.

Never a normal doctors appointment

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Friday mornings are my roughest. I am so ready for the sleeping in on Saturday morning that sometimes happens. If it doesn’t happen the staying in bed a little longer happens. Most of the time.  Having a doctors appointment on a friday morning seemed like a good idea. I am not sure why. I know how rough I am. I got the kid out the door and to school on time. I headed to the doctors office right away because traffic is still horrible here. The tourist and snowbirds are slowly going back home…..slowly.

This was a review bloodwork and make sure my medications were all still okay. I was seeing the nurse practitioner because of a schedule conflict the doctor had. Because I can never just be a cut and dry case of ANYTHING…… my magnesium and potassium are still fluctuating still on the low side….and my thyroid is off…also on the low side…but the hashimotos study and the antibody study came back completely normal. This makes perfect sense to me, because I am used to this kind of thing. The Doctors were a bit perplexed. As I have a heart condition as well and am on medication for that, she is a bit hesitant to start thyroid medication. My heart condition is fairly well controlled with medication, however that does not mean we should take risks. If we do start medication it will be with an event monitor to make sure that I don’t have any SVT episodes(read my heart goes wacko, arrhythmia). For now we are doing thyroid level checks every three months and checking the antibodies every six months.

She was incredibly pleased with my progress on loosing weight and walking. Both of these will in the long run also help my thyroid along with my heart and other things. The progress is also why she was hesitant to start thyroid medications, afraid it will affect my heart and set me back walking and weight loss wise. We discussed diet and how juicing is helping. She was a little bothered that I only drink juice in the morning for breakfast and water. I am not a breakfast person. Unless breakfast is at ten or eleven am. She said she would like to see some grains introduced into my breakfast but since I was getting such packed nutrition from the juice she was not going to push it.  I have cut back my soda and coffee and that too will only continue to help. I told her there is one thing I do , do……the week before my period. I go with what I want, not necessarily what is healthy. We also discussed the once a week frozen yogurt. She said she wasn’t concerned because it was frozen yogurt first of all and the amount of fresh fruit I add was enough she felt the hot fudge and carob chips were an okay splurge. 

I was on prednisone for several years. During that time I had issues with skin scarring and keeping my skin moisturized enough. When I went off it , it slowly got better and went away. It is back. However she was not concerned that it was a new thing. It can take several years for skin to return to normal and will take intensive moisturizing treatments. Oh more fun. I am so horrible at remembering to do this, plus my OCD hates the texture of most of the lotion and creams.

While my magnesium and potassium oh and vitamin D levels are just slightly below level, we are still gonna keep an eye on those too. Its a relief to know that I am not taking too much because the levels I take are fairly high. It concerns me. However my body just doesn’t seem to like to hold on to those things.  Malabsorption is so tricky. Sometimes I absorb things great. Other times not so great. There is constant adjustments needed.

We then discussed the upcoming trip in August to Epcot and camping. She doesn’t see it being a problem for a low dose muscle relaxer for a week. It is one less thing for me to worry about. I can work on progress with distance in my walking. It will help with endurance. Camping and keeping up to an excited nine year old will be hard. This is just a little edge off at night to keep me going for four days.

After such a good doctor visit and leaving so pumped. I treated myself to Starbucks. Just a single shot espresso. I add sugar to it and it reminds me of Cuban coffee I used to get with my Dad. Its a nice warm fuzzy memory to set the rest of my day with. Not to mention the boost of energy and possibly being productive with housework today!

Must be nice to lay in bed all day

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I think this is the number one comment that drives me nuts.It must be nice to lay in bed all day…to stay in bed…..and things to that effect. If you are just lazying about and can get up and down whenever you want without the slightest hindrance…..maybe. If you have no problem being upright when you need to move because you are getting sore from laying in the same position…..maybe.If that is all you are planning on doing and you are pushing things aside because you WANT to …..maybe.

I really struggle with the whole resting part of chronic illness. I know I need to. I know my flares would be less. I just have never been very good at doing nothing. I struggled for awhile trying to balance not working , saving energy to parent after school and having a life. If I stay home and rest, it is really hard to get up and moving after getting the kid because I expelled more energy than I realized trying to rest. I am home so I should be doing dishes, or laundry, or getting the kid’s room organized again. Maybe I could reorganize the pantry. I could even sit in a chair for most of it. For the record that is not resting.  I can’t sleep during the day if I want to be able to sleep at night, so a nap is out of the question.

When I do force myself to take a rest day and stay in bed. It helps. Imagine that. It may take me eighteen hours or so of resting to be able to function again but I can function again! The trick is not to go crazy and clean the house and do to much and exhaust myself all over again. This is where pacing comes in , another area that I am not so good at.

It is a constant battle though to keep myself in bed because I know thats what my body needs. The guilt starts to eat at you that the house is falling apart. That you can’t keep up the house because your body requires so much rest. If I did clean the house and push myself then I often have nothing left to do anything with my daughter after school, again the guilt.

When I say I need to stay in bed all day, it is not a luxury. It is a requirement. It is not one that I admit to and concede to often. When I do it is serious. I have probably pushed myself for too many days in a row.  I am better at forcing myself to take these rest times or days. I still have progress to be made here.  I still need to let go of the guilt. I still need to stop while I am ahead. When people say this to me I struggle to be nonchalant about it. I try to just shrug it off and not let them know how hard it is.

Start

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That is the key. First you have to start.
Many people assume because I go on walks, I am feeling better. It looks impressive that I walked two miles.It is impressive but it did not happen overnight. I has been over a year though since I started walking and it has been slow and steady increase.

When I first started half a mile completely fried me for the day. It was all I could do to make it back to the house.

I didn’t give up though. I kept doing it. First it was one walk every three days.. Then every other day.. then every day.

This allowed me to ease  my Fibromyalgia and arthritis ridden body  to walking. Giving myself time to deal with flares when they happen.

It wasn’t about stopping when I hurt. If I did that I would never get anywhere. You will find that there is a period of time that the walking makes you feel better. It is typically ten minutes into the walk for me. Then I can go for a bit a feel pretty decent. Then the pain returns. That’s when it is time to turn around or be heading back.

Be gentle with yourself. Fibromyalgia does not like it when we try to minimize its impact on us. Remember that you need rest after these walks. Typically there is not a lot left for me to do for the day when I take my walks. If I take them too early in the morning I am completely fried for the day.

Track your walks with a pedometer. I use an app on my phone. It helps to keep you on schedule with walking. It is also an added bonus of something to show your doctor to show you are trying.  It is also fun to see the patterns you walk on the GPS mapping part of it, at least for me it is.

It is also important to remember to hydrate yourself. If you don’t like the taste of water. I recommend chugging at least eight oz of water prior and after the walks. Remember to keep hydrating through out the day.  I have found that people with Fibromyalgia need more hydration that normal.  It helps your muscles in so many ways.

Something else that helps is having someone else go on the walks with you. When I first started out I went with my husband or my best friend, neither of them have chronic illnesses but, they know when I am pushing myself too much. Now I tend to walk with another friend who has chronic illnesses. We keep each other accountable for walking. Now we tend to walk twice a week and we are averaging two and half miles. Sometimes it is too much for me, sometimes it is too much for her. We get each other through it.

Keep playing around with it and find what works for you. It maybe that it works better for you to walk in the morning. It maybe something you do by yourself,for yourself. I promise you will find it helps in so many ways than just exhausting you.

Walking can help improve your mental state, ease anxiety, it boosts your energy levels, it increases your Vitamin D intake(since most people walk outside in the sun). It strengthens your heart and other muscles, it aids weight loss. It can also help prevent dementia and lower the risk for other disease. I also find that when I am dedicated to walking, I sleep better at night too.

It is to your benefit to get out there and walk. So get out there and just START!

 

What eating has to do with Fibro

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First and foremost…. before changing your diet…consult your doctor. It may seem like a silly thing or something you would shrug off. It can be a big thing. SO, talk to your doctor first!

I know a lot of people probably expect this to be about night shades and to stay away from them. I really don’t have any problems with them. Some people do.  It is something to look into for each person individually.

Fibromyalgia made me even more sensitive to additives, preservatives and such than I already was. I was diagnosed with artificial coloring allergies when I was five. Am I great at avoiding these? Nope, not even close. There are some things I won’t give up.  My snickers and Mountain Dew are non-negotiable for me. They are also not things I indulge in everyday. Honest. I don’t drink Mountain Dew every day.

When I am flaring or thinking I am starting a flare, I turn to more and more fresh fruit and veggies as snack. The one thing I have found to be true no matter what is that most people with Fibromyalgia have a distinct lack of magnesium. So break out the almonds, cashews, pumpkin seeds and pine nuts for snacking in between meals. In the meals I tend to stick to dark leafy greens, Plain no fat yogurt sliced bananas and I might even top it with some flaxseed and honey, or my other stand by….lentils.  Fish and brown rice is a good meal as well that is rich in magnesium. Sometimes that is enough. Sometimes I end up mixing some Natural calm which is an easily absorbed form of Magnesium.

The other thing that is essential for anyone but even more for fibro people is hydration. Drink water. Drink more water. When you think you have drank enough water….drink another glass.  Constantly throughout the day. I often joke that the first thought on my mind when I wake up is coffee. I actually take my pills with about six oz of water.  I try to stick to the rule of anything I drink that is not water, I drink twice as much water afterwords. If I have a 12 oz soda, I drink 24 oz of water.  Not to get too gross but pay attention to your urine. It is a good indicator of where you stand hydration wise. The darker it is, the more water you need to drink. I am really a stickler for just plain water. Occasionally I will use Mio or something similar. I know some people don’t like the taste. Truthfully I didn’t either. I just told myself there was no other choice. For months I would gulp 8oz down as fast as possible. Now I wouldn’t say it was a love affair but water is good.

The best way for you and your DOCTOR to tailor your diet to help you is to keep a food journal.  Keep one for at least six weeks minimum. It needs to list any and all symptoms along with the foods and drinks you are having.  This was how I found I have  a pretty severe intolerance to corn. You will start to see some consistencies in what you eat and symptoms you have. Don’t discount symptoms that start two to three days after eating a food either. You are looking for patterns here. It is not always an immediate response. Explore what happens when you cut out gluten, or lactose..Or both. I can handle lactose and gluten . I tend to do better when I don’t drink real milk which is okay for us since my daughter is lactose intolerant. It can be hard when others don’t have the same dietary restrictions. Ideally also incorporating anti inflammatory diet aspects in during your food journal time is a worth while investigation.

Do I cheat on this? ABSOLUTELY. There are days that sugar and caffeine and sweets are what keep me going. Is it good? Nope. Is it necessary? I guess that is specific to each person. For me it is.  Are there days that I stop at whole foods or our other market for a nutrient rich smoothie…. Absolutely. You do what you can when you can.

Start small. Start with the food journal. Discuss things with your doctor. A tip is to ask to be scheduled for a longer visit so you don’t feel rushed.

The only other tip I can think of is… this ..and this kinda rocked my world a bit… Morning is not always the most ideal time to take a multivitamin. For me, most of the time ten or eleven thirty is a good time to take it . There are mornings I wake up and know that it needs to be in my morning meds. I could get on my soap box about multivitamins. I will only say….quality counts. Also finding one that is a MultiVITAMIN and a MultiMINERAL is superb…It is always a good investment in my opinion. ALWAYS.

So that is all well and good. Then we look at what doesn’t help, often its the things us mothers use to survive.

Sugar is a big for me.  A really big. I have this little thing called yeast. It likes to grow out of control. It corrupts my brain into believing we NEED IT.  A good substitute for sugar craving….grapes. They have a lot of sugar in them. It works for me most of the time. When I am trying. Let’s face it.There are certain times of the month that grapes are not going to cut it. Unless they are fermented. Then they might have a chance.When I do indulge I like to eat some yogurt and extra water to flush.

The biggest thing I have heard is that , its too expensive to buy fresh fruit and veggies.

If you feel that then you need to look at what you are buying, and when you are hungry.

Buying veggies that are more filling like root veggies helps. Carrots are a great snack. They are also surprisingly filling. Celery with peanut butter. Filling fruits would be apples and pears. We also like to snack on Cucumbers and cherry tomatoes. Sometimes we mix them all together for some variety. Look up serving sizes and seperate it out into ziplock bags. It surprised me how long it lasted. We were still at the store every three to four days for fruits and veggies. Save your peaches, berries, kiwi, and other citrus fruits for balance in meals and desserts.

Pay attention to how you feel after processed foods. Chips, pretzels, snack cakes, and such. Your body is talking to you.  There have been times I have known within minutes of trying something that there was no way I was going to tolerate that. No matter how much my brain tried to tell me how good it is.

The less packaged processed foods I eat the less often I need Tums or Rolaids to come to my rescue.

The best eye opener for me was that first week of my food journal. My body was screaming at me. Telling me what was and was not working. I wasn’t listening.

I can’t say I always listen. I can however say when I don’t listen I pay for it. It is all about balance.