The Weight of the World

Sometimes living with a chronic illness can get you down. You feel like the weight of the world is sitting on your shoulders and you just can't take it any more. 

Ironically, for many people with sensory processing disorder, anxiety, autism, malfunctioning nervous systems, restless leg syndrome, or like me, nerve pain and dysautonomia, feeling overwhelmed can lead to feelings of having no physical anchor left in the world. 

I know that is not a great description, but it is the best I can come up with. My nerves are twitching and painful. I feel like I am going to pass out or crawl out of my skin.  Often the only relief for me was when my cats would climb on my legs. Weight and pressure seemed to be the key. 

Enter the weighted blanket. 

What is a weighted blanket you ask?  It is exactly what it sounds like. It is a heavier than normal blanket that is stuffed with plastic pellets similar to the ones found in stuffed animals. This allows the blanket to provide the user the sensory sensation of weight and pressure where ever they place the blanket. 

I have been wanting to try a weighted blanket for a while now and through a generous gift I was given the opportunity to do so. Although this was a gift, the thoughts are strictly my own. Here goes:

1.  It is heavy. Seems obvious but keep it in mind when ordering. Most websites that sell these have a calculation based on body weight to pick the weight of your blanket. But I know that I can not lift more than 10 pounds without risking dislocating something so mine is lighter than I should have. It was a compromise because there was no point in owning a blanket I could not pick up. 

2.  The "minky" fabric is awesome! Everyone in the house fell in love with it instantly. Including all four cats. And the fact that it was in zebra stripe made it even better. (The Zebra is the mascot for my condition, Ehlers-Danlos Syndrome). 

3.  It is HOT. Now this is to be expected from a weighted blanket. But especially with the minky fabric which is similar to microfleece. Because of how hot it was, I was not able to sleep with it all night. This was slightly disappointing because they are also supposed to help with sleep problems which I have in spades.  

4.  Did it work?  Surprisingly, yes!  I had a "typical for me" flare up where my leg pain shot through the roof and I felt like I was crawling out of my skin and meds were doing nothing. My dsyautonomia and nerve pain were in full flare. I was prepared for a night of misery and sleeplessness like I had dealt with in the past. On a whim, I grabbed the weighted blanket and put it over my legs and tried to distract myself with silly youtube videos. 

Within an hour, the flare had subsided to the point that I could go to sleep. I was shocked and so grateful. I think if I could have tolerated the warmth longer, it might have stopped it entirely. I now pull this blanket out whenever I start getting that bone deep, cold, disconnected feeling or any type of nerve pain. It helps almost every time. The few times it did not help I was also severely dehydrated and needed IV fluids. 

5.  Cons. They are expensive. No other way to say it. But they are worth the investment in my opinion. The blanket itself is a quality product, both in the fabric and workmanship. And as the daughter of a quilter, I am picky about my blankets. 

The heat is an issue. It is less of an issue now as New England turns to fall. In fact, I think I will like it during the cold winters. But if you live in a warmer climate or have issues with heat intolerance, you need to take this into consideration. 

After I received my zebra minky blanket, I found out that the company that makes it also sells a cotton version of their weighted blanket. As much as I love the minky fabric, the cotton might be a better option for anyone who has issues with heat. 

In my ideal world, I would have the minky blanket for the cold months and a cotton one for spring and summer. I will add that I have not tried the cotton blanket but expect it to be much the same just lighter. If I ever get a chance to try it, I will update this post. 

6.  Other uses:  This blanket has actually been used by multiple people in my home. I have a roommate with anxiety and a niece with both anxiety and ADD. We wrapped it around their shoulders during times of stress and anxiety and it seemed to help calm them. It helped my niece more, I think because she snuggled into it until she calmed. But I could also visibly see it bringing the level of my roommate's panic attack down even if she did not feel it. 

7.  So where do you get one of these magic blankets?  At Magic Weighted Blanket of course!  Seriously, that is the name of the company. 

There is of course, other places to get these types of blankets. Amazon has a few but I was skeptical of the quality based only on the photos. You can find some on etsy or ebay. You can even make your own if you are crafty. 

But having seen the quality of the blankets I received, it is worth the cost in my opinion to get it from a company that specializes in these blankets. 

I am recommending the company Magic Weighted Blanket for a few reasons. The most major being that I like and use their product. But just as important to me was their response.

When I first started looking into weighted blankets, I emailed multiple companies asking if they had any information on people with Ehlers-Danlos having success with the product. I knew it was a long shot because my condition is rare. I expected a lot of "sorry we can not help you" form responses. 

Magic Weighted Blankets was the ONLY company that responded. The others did not even bother with a form reply. This  speaks to customer service and commitment to me. A simple email saying they had no data, or even a general info sheet on the blankets would have been enough to satisfy me. 

I want to spend my money on products that work and with companies that care.  So if you decide to try a weighted blanket, I suggest using Magic Weighted Blanket.

https://magicweightedblanket.com/

And if any of you get your hands on one of their cotton weighted blankets, please let me know if it helps prevent getting too hot. Maybe some day I will get a cotton one of my own. 

As for me, when my illness leaves me feeling like the weight of the world is on my shoulders and I have lost my anchor, you will find me curled up in my Magic Weighted Blanket until I come back to earth. 

What Works for Me

In the next few posts, I am going to loosely review some items that may (or may not) make life easier for people living with chronic illness. 

Some products will be specifically targeted to peole with disabilities. But we all know that "special" products seem to cost a fortune, mostly due to their limited audience. So I will also be searching out products targeted at "typical" people that can be used or adapted to make life easier for those of us with chronic illness. 

I will be sharing the good, bad and ugly of each item. And since chronic illness varies so much from person to person, I welcome any comments showing a different use or perspective, good or bad. 

We all need all the help we can get. 

Is My Chronic Illness Terminal?

Scary title huh?  The answer is yes. In my opinion ALL severe chronic illnesses are terminal -ALL of them.  Wait?  What?  That is not what the doctors say. 

They are wrong. Let me explain. 

I have Fibromyalgia, Asthma, a connective tissue disorder called Ehler Danlos, severe allergies, sleep apnea, anxiety, the list goes on. With the exception of severe uncontrolled asthma, none are considered diagnostically life threatening. 

So why do I say chronic illness is a terminal condition?  Easy. The person you used to be is gone. As permanently gone as if you had physically died. 

I used to be a very active, ambitious type A personality. I was the go to person if you needed something done or an obscure fact remembered. I could run, jump, dance, lift and work for 18 hours straight without blinking. 

Then the chronic illnesses hit. Now I need at least one nap a day to even think straight. I can not lift more than 5 pounds without risking a partially dislocated joint. I can't go into crowded areas because the scents will make it hard to breathe. I have to rest for days in order to enjoy an all day event. The pain never stops. 

Sounds like I am describing two diffetent people huh?  Well in a way, I am. People ask me how I cope with my illnesses. It was not easy and it was not fast. Some days I still hate how my body fails me. 

But what truly got me through was realizing that the person I was before was gone. She had died. And I needed to allow myself and those around me to grieve that loss. The grief has lessened over time but just like the physical loss of a loved one, it still hits you at random times. 

Out the ashes of the person I was has risen the person I am today. I had to get to know this new person. Figure out how she fit into the world. And learn to love her as she exsisted now rather than seeing her as a shadow of who she used to be before chronic illness took over. 

I also had to introduce this new person to the people in my life. Some have learned to love and accept the new me. Others were unable to do so and I sadly had to let them go from my life. But it has allowed me to be happy and that is what is most important. 

So if you are struggling with what used to be or looking back, stop. Accept the fact that your former self is gone. Grieve for the loss. Understand your family and friends are grieving too. Let the past go and look to the future. 

It is time to start loving who you are now. You are worth it. 

Where Did I Put That?

One of the most frustrating things about having a cluttered, disorganized home is not knowing where to find something when you are looking for it.   But I don't have to tell you that. That is the reason we have all chosen to go on this decluttering journey.

But ironically, for people with chronic health or memory problems, one of the most frustrating parts of organizing your home is remembering where you put everything. 

It is great if you have decluttered and now have all the items a room all tucked neatly in their new homes. But if you think you are going to be able to remember where all these new homes are, forget it. 

It is time to meet your new best friend: the label. By labeling your various bins, baskets and containers, you can tell at a glance where things live. This speeds up both the time it takes to find it and the time it takes to put it away when you are done with it.  It also helps other people who are not inside your head figure out where to find anything. 

There are so many different ways to label things that your imagination is really the only limitation. You can hand write labels and stick them on with tape, print them from a computer, use a label maker, create an elaborate handmade hanging tag, you name it. All are good choices. 

But my current labeling obsession is chalkboard tape. I love it. It is an adhesive tape with a chalkboard surface. You can cut it to whatever size you need and write on it with either regular chalk, or as I prefer to use, a chalkboard pen. 

The main reason I like this is because it is so easy to change the label. I started using this tape for labels when we were organizing Paige's room.  Organizing a kid's room is a challenge because as soon as you think you have stuffed everything in a bin, more stuff shows up. This lead to lots of changes in where we decided to store things and what bins worked best for what. 

With the chalkboard tape, any time we changed our mind about what went in a bin, we could just wipe off the label and rewrite it. The one drawback to the chalkboard tape is that the adhesive on the back is not that strong so it does not always stick well to fabric bins or baskets so you might have to restick it every once in a while. 

My other current favorite choice for labels is Post it brand label roll. It is basically a big continuous roll of fully adhesive post it note in a tape dispenser. It sticks better than the chalkboard tape to some surfaces and can be easily removed from a bin but the label itself can not be wiped clean. I just use a sharpie on it and slap the label where needed. 

It is not as pretty as the chalk board tape in my opinion, so I tend to use this more on things that are out of sight. 

What ever you use, I suggest you stick to one or two labeling styles. Why? Because it is very likely that at first you will be organizing with a collection of mismatched bins, baskets and containers. (Remember, we are not running out to buy a bunch of expensive matching containers before we know what we are storing and that the system works for us, right?). 

Below are some of the various containers we used to organize Paige's room. Her room is far from perfect and everything is stored on mismatched furniture. She is at an age where her style is going from kid to tween to teen so we are not buying any new furniture until she figures out exactly what her new style will be. 

In the mean time, using the chalkboard labels helped tie the look together more, made it so she could actually find her toys to play with them and wonder of wonders, put them away!  

So learn to embrace labels. They can be an invaluable tool to help keep your space organized. I will warn you that your friends and family might make fun of you for turning into a label crazy lunatic who labels anything that sits still for a minute. 

But as long as you are not trying to label the cat, dog or any other living being, I say ignore them and go for it. 

There's No Place Like Home

I have said before that the key to an organized space is for everything in your home to have a designated home. It is a simple concept but so hard for many of us to execute.

For some of us, our things have never before had a home so finding homes for literally everything is overwhelming. I get it. I really do. Just take it one item at a time and it will get easier the more you do. 

Some of you may say "My stuff has a home but it never seems to stay in it".  If that is happening, you need to do some thinking about why. The answer might be different depending on the item. 

It might be that you are not used to putting things away because they are easier to find if they are in sight. Be patient with yourself. Trust the organizing systems you are putting into place and give yourself time to develop the habit of automatically putting stuff away. 

The other possibility is that the item has a home, but it is not the right home.  We tend to put things where "they" say they should go or where "it makes sense" for them to be. 

But in reality we should store them where we use them. Or even where we tend to put them all the time. Even if that does not make sense to other people. 

I have trouble lifting anything over 10 pounds. It is not good for me. But I also don't leave the house without the bag that holds my nebulizer, epi pen and other emergency meds. 

So if I go shopping, it is a huge effort just to get this bag, my purse and the few shopping bags from my car, up the walk and into the house.   I am literally exhausted when I get in the door and just drop them in the entry way. Which quite frankly looks like crap. 

I have tried in vain to change this habit, getting angry with myself because I was not succeeding. I finally realized this was a limitation of my health and I needed to find a way to deal with it. So I did. 

This is the bin I got to hold my bags when I get home. The stuff still gets dumped right inside the door, but it is contained in a pretty bin so it looks better. And I don't feel so bad. 

It took running up against one of my physical limitations to make this clear to me, but this really applies to any item in your house. And since we are hoping the children in our lives grow up with good habits rather than learning them as adults, here is the bin to contain Paige's school stuff. It not only contains it, it makes it so she knows where to find it!  

So store stuff where you use it not where it "should" be stored and it will be much more likely to stay in its home. 

We actually store our cordless drill in the cabinet with our spices because it is used most often in the kitchen. Do you have items in your home that might need an unusual home based on where you use it?  

What are they and where do you use them?  Share with us!

All Containers are Not Equal

Ok. You did it!  You decluttered an area, whether it be a table, a drawer or a shelf. Good work!  You know what you want to keep, but wait ... You have no way to store it. 

Now is when you start organizing vs decluttering.  First group like things together. Once you do that, you might find more to get rid of. For example, when I started organizing the three drawers in our bathroom vanity, I realized we had way too many half empty dentist giveaway dental flosses and travel sized toothpaste tubes. I got rid of most of them. You may find a smiliar hoard that you did not even know you had. 

Once I started organizing these drawers, I realized just how much space was in them. It was great!  But, wait. Empty space is clutter's nirvana and just tossing stuff in drawers will quickly lead you right back to where you were when you started. 

The key to keeping stuff organized is to give it a permanent home in a contained space. That usually means baskets, bins, containters, oh my!

DO NOT get sucked into buying bins before you know what you are going to store in them. Organizing supplies are cute, fun, varied and addicting. If you are not careful you will have to declutter your organizing bins. 

So what should you look for in an organizing container?  Here are a few questions to ask yourself before parting with your money to buy a bin.

 

1.  What am I going to store in this bin?  If you don't know the answer to this question, back away from the bins. And "something" is not an appropiate answer to this question, sorry. 

2. Will what I want to store fit well in this bin?

3.  Will the bin fit in the space I planned to store it?

4.  Is it worth the cost?

Don't get me wrong, I am not advocating you go out and spend tons of money on bins. In fact, I am suggesting the exact opposite. Most people with chronic illness don't have money to spare. We are new to the organizing game and we are going to make mistakes or just change our minds about our new organzation systems once we live with them for a bit. This is normal and a good thing. 

One of my current favorite places to get bins is at the Dollar Tree, a local dollar store. Every bin is literally $1 so if it ends up not working it is not a huge loss. But still be careful to be picky about the quality of the bins. Even $1 is a waste of money if it breaks the first time you use it. 

For us, this means any bin we bring into the house has to stand up to the weight of a cat trying to cram itself into it. Because if you leave a box, bin or basket unattended for even a minute, it will have a cat in it. 

So what did I use to contain the items I wanted to store in my bathroomvanity  drawers?  Well, I looked at drawer organizers online and in stores and said "no way am I wasting that much money on those"!  I am pretty cheap. 

Instead I thought back to the very first area I decluttered - our plastic food storage containers. I got tired of the falling on my head and pulled out any that did not have a matching lid which was pretty much most of them. 

But you know what?  They may be useless as food storage containers but they work amazingly well as cheap (or free in my case) drawer organizers!

So make sure you are picking the right bin for the job, even if it means holding off on organizing an area while you shop around. Don't spend aren't more than you need to and try thinking outside the box for storage ideas that might already be in you home. 

Decluttering with Training Wheels

Do you remember what it felt like as a child to sit on your tricycle and watch the older kids fly by on their two wheelers?  Were you like me and sat there yearning to taste that freedom but with no idea how to get it?

And then came the miracle answer - training wheels. That wonderful thing that bridged the seemingly insurmountable gap between three wheels and two. 

Well for many of us, decluttering is like learning to ride a bike. Going from cluttered to organized is too big of a jump. We need training wheels. Don't be ashamed. Raise your hands up and say I use training wheels and I am proud of it!

And now let me introduce you to the declutterer's version of training wheels:  small sorting bins. 

Go out and get yourself two SMALL bins to use for sorting.  Don't let this photo fool you. This is not a laundry basket. It is small. The dimension are about 10" x 13" x 5". It needs to be small so you do not get overwhelmed. 

So how do you use these baskets?  Easy. Pick an area, any area. I do not reccommend starting with the area that completely overwhelms you to even think about. Instead chose a random area of clutter. We chose our kitchen table. 

Now fill up one of the bin with clutter that needs to be sorted or anything that does not have a home. Once the bin is full, stop!  Resist the urge to cram the bin untill it is over full.  It does not matter if there is still clutter in the area you picked. Ignore it. All you care about is what is in the bin. 

Now it is time to sort. 

Quickly go through the bin using the following steps:

1. Throw out anything that is obvious trash

2. If you know at first sight it is a donation, put it in a bag for donations

3.  If you want to keep it put it in the second bin. 

These should be quick instinctive decisions, don't labor over them. Your first instinct is usually correct. 

Once you do the initial sort, it is time to deal with what you decided to keep. These items will fall into just a few categories. 

1. Items that have a home but were left out - put them away - now. 

2.  Items you like but that you have no real use for - consider letting them go and put them in the donate bag - now. 

3. Sentimental stuff - put it aside to be sorted later after you get the rest of the clutter under control. 

4.  Items you want to keep but that do not have a "home". 

This is where decluttering usually gets derailed. "I want this but I don't know where to put it."  This leads to people putting the stuff right back where it was and giving up. 

But with training wheels you are not going to allow yourself to get sidetrack by these items.  Instead place them in a box which will now be known as the " needs a home" box.  All you are doing right now is deciding what is staying or leaving your home. 

Why does this step trip so many people up?  Because deciding what to keep is decluttering. Figuring out where something should live is organizing. They are not the same thing. And if you try to organize an area before you completely declutter it, you will fail. Trust me, I know. 

So use your training wheels. Keep the bins small to avoid getting overwhelmed and stick to decluttering. Organizing will come later. 

I am proud of using the training wheels my sister gave us to declutter our entire kitchen table over the course of a week. Won't you try it out?

If you do, post a photo of your progress. I would love to see them.