New year's resolution? I'll pass

As I am writing this, it is still 2017 for 4 more hours. I actually love starting a fresh new year, in the same way that I love Mondays, the first day of the month, and the first book of a new series. I like the feeling of possibility, and that you can have a fresh start in your life any time that you want one.

The first day of a new year however, is arbitrary, a Human invention, and you can start new on a random Wednesday at 2pm if you want to. That's why I'm not a fan of new year's resolutions. It puts unnecessary pressure on you to change everything at once, and, even harder than that, to keep up all of those changes for a whole year.

The picture I have chosen for this year is one of my all time favourite items, a pillow. The humble pillow does so much for me. I put one between my legs to stop them cramping. Under an arm to get a more comfortable night's sleep. I cluster them around me when I'm spending the weekend in bed with Netflix. Pillows, I salute you. If you have not accepted pillows in to your life as a true companion, I suggest you do that in 2018, (but only if you want to of course).

For the year ahead, there are already some things I have agreed to do, and so I'll just carry on with those. Number 1: decrease my body fat. I promised my therapist I would keep on with the gym, and I will. Number 2: keep up with the exercise my physiotherapist asked me to do. I haven't actually managed to do them every day yet...but every other day is better than no days.

Whether you are out at a party, having drinks with friends, or spending a quiet evening alone, I wish you all the best, and a stress free year to come.

Lisa

Happy Holidays 2017

Christmas for me has always been a pot luck. Some Christmases I'm single, some coupled up, some were big family affairs, and others were just me and a partner having a quiet one.

Two Christmases ago I had to leave midway through celebrations at my parents house, because I was in so much pain from my endometriosis that I had to go and lay down. Last Christmas, I was happily snuggled away with Mr Tech, feeling like a million dollars.

This autumn/winter my right knee has decided to wave the white flag. It felt like my kneecap was trying to twist right off, and the skin was painful to touch. I managed to drag myself to a physio. (I often lack the mental energy to plan these things). Luckily, she was excellent. We talked through my hip dysplasia and my current issues. Somehow she convinced me to do some acupuncture on my knees right then and there, with no cuddly toy for me to hold!

Though not a cure, it definitely made a difference straight away. She also gave me some exercises to do at home. I will certainly attempt to remember to do them every day....

Tomorrow I will be at my parents house, being over-fed and generally treated like a tame house-cat. It's going to be awesome.

Whatever you're doing, and whatever you are going through, I want you to remember that you are not alone. Some Holidays will suck, and some will be great. Never be afraid to put yourself first, and do what you need to do.

Wishing you all the best

Lisa x

You better work b**ch

Britney gives us life's no.1 rule. (click for video)

This week, I'm channeling a blend of Britney Spears and RuPaul.

I've been hardcore binge watching RuPaul's drag race for the last few weeks, from season 2 onwards. (Why no season 1 Netflix?!)

There is so much incredible talent on that show, and people who have overcome all kinds of life challenges. (Prison, childhood abandonment, family rejection, illness and disability to name a few).

It's been a while since I did any serious exercise. Extreme cake eating is not considered a sport, and neither is marathon sleeping. However, I made a promise to my therapist that I would start up some kind of exercise routine.

It's nerve-wracking to walk into a gym for a lot of people. There's a common fear that it will be wall to wall Gods and Goddesses, wearing practically nothing as they effortlessly work out without sweating.

In my experience, people of all body types go to the gym, and very few people are paying attention to those around them. If anyone did look at me, I had decided that it was because I looked fierce and sickening, and they were jealous of my boogie (and booty). By today's pop culture standards I have a rather small bottom, but I'm very pleased with it. Work what you have!

I stepped on to that treadmill, and I started my journey back to getting into shape. And it was hard. I could only manage half the distance that I used to do, and with a lot of walking in between jogging. I sweated. I struggled to breathe. But I had some good songs playing on my iPod, and I kept going. 

And then two days later, I went back again, and it was already so much easier to talk myself into it. Tomorrow, I'll be going again.

No, it's not my favourite way to spend an hour. In all honesty, it ranks somewhere with being set on fire, and having to eat a bowl of carrots. But, if you want to be healthy, happy, and delay that hip replacement for as long as possible, you better work b**ch.

Much love.
Lisa

Spoon Theory

About two years ago, I first came across Spoons.

A Spoon is a unit of energy commonly used by people dealing with chronic illness. Below is an example of how spoons are used in day to day life. It's not an exhaustive list by any means, but it's a good starting point to figure out your own energy use.

So why am I talking about spoons today? Well, having chronic pain, physical disability, and mental illness uses a lot of spoons. So many, that other things often have to go by the wayside. As much as I love writing this blog, and hate to see how long passes between posts, I simply run out of spoons too often to manage it. So this is both an apology for lack of posts, and an explanation.

Let's say I start the day with 20 spoons. Before I get to work, 3 are gone. During the course of the working day, another 15 are gone. Now I have only 2 spoons left to cover everything I might want to do in the evening. A meal out or a trip to the cinema puts me into the minus spoons.

Every day, I am using more spoons then I have, and so by the weekend, there's a massive imbalance to correct. Having the energy to write, to see friends, to even get out of bed, can become impossible.

This is the situation faced by people world over. Struggling to get by, having to choose between doing something they would enjoy, that will wipe them out for the rest of the week, or staying home and playing it safe.

Recently I started seeing a great therapist. We talked about my lack of energy, and how I can recharge. We agreed that it's perfectly OK to put time aside just for sleep. So now every weekend, I'm putting aside a sleep day, where I make no plans at all, and allow myself the time and space to just stay in bed and recharge.

Staying in bed all day has a lot of negative annotations. It's the kind of activity that brings out negative comments. The act of sleep is seen as lazy, wasteful, even bad for your health.

Well f**k all of that. I'm going to do what's right for me. Now fluff my pillows, it's time for bed.

Lisa x

Summer is here: time to hate yourself!

Never have I seen my facebook so crowded with scams, pyramid schemes, weight loss procedures and boot camps.

Let's play a little game with this print out and play bingo card.

Can we all just take a minute to remember that being overweight is not the biggest crisis most people will go through. Don't offer unsolicited advice to people on their weight. Trust me, they know how much they weigh and they already know if they feel good or bad about it, it has f*** all to do with anyone else. Don't offer helpful tips. Don't talk at length about what worked for you.

Please, for the love of science, don't sign up for 6 worthless sessions of cool sculpting, don't buy skinny wraps (there is no possible way they work!), and definitely don't get sold a jar of magic beans.

Those of us who have been through, or are in the midst of, a health crisis can often feel that their bodies are out of control. Chances are, if you're stuck at home in bed, you've gained some weight. Well, so what. You're alive. Being fatter and alive is better than being thinner and dead.

 The fact that gyms, personal trainers, and horrible, soulless pyramid sellers everywhere see summer as the perfect time to prey on people shows how vulnerable people are to self hate. Summer is when we have to show some skin, and we don't want to be the worst looking person on the beach right?

F*** all of that. To everyone out there battling illness and or disability: your body has gotten you this far. It is the best friend that you have. Show it some love, because it loves you, and take yourself out to the beach. Or stay inside with a fan. Sand isn't all that great, and seaweed is totally gross...

You do you.

But we should all dance to the below song. 


Haters Gonna Hate

Have a great summer.

Lisa x

Life: I get knocked down, and I get up again

I thought this would be a quiet year for me.

Last year I spent most of the time in pain, waiting for my endometriosis to be removed, and then in recovery from the surgery. When I got back to work in September, in a brand new, shiny job, I thought things had finally settled down.

When it comes to my health, I think on two levels. My normal level includes the daily pain I get from my waist down, in my muscles and joints, as a side effect from my dysplasia. This is normal, day to day life for me. If it hurts more than usual, I have a hot bath, or I spend more time sitting, but I don't think about it too much.

Then there is the abnormal level. This is anything over and above that pain. Anything in this level can push me over the edge into being unable to do much of anything, because my body is already under stress all the time.

It was the abnormal level that had been dealt with last year, freeing me up to go back to normal life.

When you've been through a big health scare, it changes the way you think about things. Life doesn't phase you quite so much. It was only because I have built up my resilience so much these last few years that I was able to cope so well with that happened next.

There I was, happy. I was so confident in my financial situation and job that I purchased a second hand car. An automatic that would give me more autonomy. I just can't do the long walks like I used to!

And then I got fired. I got fired in a particularly callous, brutal way, along with other unsuspecting staff. No warning. We were just called downstairs, told the company no longer required us, and told to get out and not come back.

It was so surreal, I can still hardly believe it now, more than a month later.

So there I was, unemployed with no notice, with my shiny new car (sort of, it could use a wash actually) and I thought WHY UNIVERSE? WHY DO YOU HATE ME SO MUCH?!

And then I just had to get over it. Yes, it was unfair. Yes, it sucked. But spending days crying and eating chocolate was not going to get me a new job.

So I went to a recruitment agency. I went to interviews. And three weeks later, I had a new job. And you know what, I like it there a lot. I get to work with a great team, and I get to spend my time doing what I enjoy.

 I get knocked down 

Click to enjoy a rousing song 😺

Guest post: The Land of the Lost

Let me introduce myself, I am Winslow E. Dixon. I have Medullary Sponge Kidney Disorder, Endometriosis and due to the stress of those two things- developed adrenal failure (Addison’s disease). I am a former geriatrics specialist and holistic health coach. I am now a freelance writer, columnist and author. 

I have a chronic illness, but I refuse to be defined by it.

Sometimes, with chronic illness we feel stuck, trapped and overwhelmed.

Times like this I call falling into the“Land of the Lost.”

It’s that point where you feel restless. You can’t sleep. You find anything that will distract your mind long enough for you to succumb to exhaustion and fall asleep.  

I know every single human being has had a night like this, especially those who struggle with health issues and pain.

It always starts the same way; thinking too much. Thinking about how much pain you’re in….thinking about how you wish you were well again….thinking about how you wish life would be. 

Here are tips for nights where you may be stuck in the “Land of the Lost”-

      1-  Write down what is bothering you.

2- Write down one good thing in your life for every problem you wrote down.

3- After steps 1 & 2, find a distraction. Panic attacks, tears and worry do not solve anything! (Distraction list below)

4- Find a source of comfort. Try drinking some hot tea, wrapping up in a freshly washed blanket, spraying your favorite scent or putting on your favorite shirt.

5- Avoid sad triggers! Stay in your calm state and get away from any remembrance of what is bothering you. Find a mental “chant” to remind yourself to stay away from negative thoughts. (My mental chant is “Don’t go there”   example- Oh; I wish I was thin again like before I was on steroid medication.  DON’T GO THERE. Think about something else)

List of possible distractions-

1- Pinterest! Type in something you love (clothes, art, photography, animals, etc) Look up recipes and maybe even a new hobby to try

2- Favorite movie or book.  Netflix is our friend!

3- Youtube.com. Maybe look up bloopers of your favorite show. That’ll give you a laugh for sure.

4- Pop in your headphones and play some happy or calm music. Do not 
play any music that will remind you of anything upsetting or troublesome.

5- Doodle! Yeah, like you did in 7th grade English class. It’s fun to draw random things.

6- Stare at the stars. Soak in the sun. Enjoy a moment outside!  Be very careful with this. Do not let the beauty of the sky be degraded by worry and negative thoughts.

The next time you’re in the land of the lost, I hope these tips help. Wishing everyone hope and healing <3

- Winslow E. Dixon

Winter: my old foe

Those of you have read some of my early posts may remember my intense dislike of the cold. Not just because of wearing so many layers that you can no longer bend, but because if there's one thing that agitates arthritis, it's the cold.

 (Image: Living with oesteoarthritis - symptoms - pain, stiffness, swelling, sensation/rubbing of bone on bone, crunching/popping sounds during walking, limited movement, especially in the hips)

Basically, I plan to start a petition as follows.

All people suffering with arthritis or similar, or otherwise greatly affected by the cold, should be immediately relocated to the tropical paradise of their choice. 

I think that this idea is perfect in its simplicity. No more stiff joints. No more painful walking. In fact, it's a wonder that anyone hasn't come up with this before.

Now that spring is here, we have plenty of time to get this idea off the ground! OK, so maybe we won't get the tropical paradise of our choice, but I'm flexible! How many cupcakes do you think we would need to sell to buy an Island? Like, 100?

Poor people don't deserve healthcare

Having grown up in England in the 90s, I had certain expectations from life. It was a given that my parents took me to the doctor and the dentist, and did not pay for these services. These were essentials, not luxuries. They seemed to me to be part and parcel of our Human Rights.

 What a shock then, to discover that this was not so in other places. When we moved abroad, I was exposed to a much crueler world. With the rising popularity of the internet in my late teenage years, I got to learn that in fact, many governments do not take care of their people. If you can't pay, you don't get treated.

What kind of b******t is that?

This struck me particularly hard when I spent around 9 months off work due to my endometriosis (for which there is no cure, by the way). I filled in extra forms to get doctors bills paid for, and was given an allowance that would cover 1 visit a month. I was actually seeing a doctor twice a week at one point.

That there are people out there who don't support free healthcare shocks me most of all. Do these people think they are immune from all of life's illnesses and accidents, waiting around the corner?

Despite being born disabled, when I was first signed off work I was in the best shape of my life. I was exercising 5 times a week, eating my greens, making my own smoothies. I was determined to make the most of my body.

It didn't stop something bad from growing inside me. No amount of green juice and vitamins guarantees health.

Should you ever have the opportunity to vote in free healthcare where you live, have a good long think about it, and vote yes.

Lisa

The brain drain of the 9-5

For those of you who don't know the history of this blog, here's a little catch up:

1) I have bilateral hip dysplasia. There's no cure for this, and it means I have pain every day of my life. I am 30 and I have arthritis. Dysplasia covers a broad spectrum. Some people have it better, some much worse.

2) In my late 20s I became seriously ill due to undiagnosed endometriosis. I recently spent 9 months out of work.

So, in September I started back at work, which has been amazing. It's a job I love, with great people, and I have access to all the cups of tea I can drink and free fruit I can eat. Living the dream.

It has been a hard slog though. After 9 months more or less on the sofa, with a few stays in hospital to break it up, it's a strain to be working day after day. My brain has seemed to just wave a little flag at the sight of 5pm.

The worst thing has been not writing. I still have so much to say on the subject of disability, I literally have a page of post titles written out, just waiting for me to put my angry but well-spoken self in gear.  (I'm not always angry, but I do find it a great motivator).

For all of us doing our best with less than perfect health, I think we owe it to ourselves to expect a little less. It's ok to not be making perfect meals every night, taking up extreme quilting (turns out that is a thing), writing that novel. Sometimes just living day to day is hard enough, and anything on top of that is a bonus. Yeah it would be nice if during those 9 months I had made myself a classic 50s dress out of curtains and spare doilies, but I didn't. I was ill, and I played facebook games and watched Judge Rinder. And that's ok with me.

 And now I'm working. I'm not writing like I used to. I can't maintain the same level of sport I used to do. Hell I can't even maintain the same level of late nights.  But I'm doing my best. I'm sure you are too.

Love to all of you reading.
Lisa.

You have to fight for your right (to be diagnosed) : part one

Twice I have been in a situation where I have had to convince doctors that I have real physical pain, and that it's not just psychological. I'm not denying that your mental health can affect your physical health, but sometimes there really is just a physical problem that needs correcting.

When I was about 26, I started to get really awful pain in the back of both hips, along the area round about where your kidneys are. I had experienced this sort of pain before, generally in the winter, and it seemed that it was getting worse year on year. I had mostly ignored it. Applied hot water bottles to the area when necessary, took solpadeine, and tried not to exacerbate things.

In the end though, it got so bad that I had to go to the doctor, and they agreed that I should get some x-rays done. Before the x-rays, I met with a hospital doctor, who was dismissive when I tried to explain where the pain was. They basically said that there was no way I could have pain in those areas. But I had my referral and the x-rays went ahead.

Well. It was extremely satisfying to see the proof right there in red. The giant areas of inflammation, exactly where I said the pain was, that showed how my muscles were strained from my hip dyslpasia. It was also a bit shocking, as I had not realised that my condition was so bad.

After I got the proof I needed, I was handed over to a physiotherapist. She taught me specific exercises to do every day to strengthen certain muscles, and she also did some acupuncture to stimulate the muscles and ease the pain. Acupuncture is said to be painless. Well it's as painless as having giant needles stuck in your muscles can be. I also started to swim consistently, every week, something I still do now.

Getting someone to work with me on what I could do to ease my condition made such a big difference. It allowed me to manage my pain, and also allowed me to pursue new sporting activities that I previously would have avoided. I learnt to rollerskate, (I can also skate backwards!), and I took part in two 5k obstacle races. 

I would never say don't listen to a doctor. Mostly they know their stuff. But you know your own body, so don't just take what they say as doctrine either. Don't give up until you get the result that you need.

Putting on your best face

Getting through interviews is tough. Looking for jobs is draining to begin with. The internet is awash with millions of them, and a lot of job descriptions are nearly identical, so sifting out the good from the bad is a job in itself.

In the last few weeks I have been to 7 interviews. This is sort of good. When I was younger, with fewer qualifications and less experience, job interviews were very hard to come by. I could apply for ten jobs and hear nothing, and that was not unusual within my peer group. However, interviews are so massively draining!

By the time I was up to interview 5, I really had to fight the urge just to take to my bed in the afternoon and stay there until the next day. On top of that, I came down with a cold. I had to rely on juices and disgusting sachets of lemsip to keep me going.

This morning was interview number 7. I was tired, but I was prepared. I had thought about cancelling and rescheduling for when I felt better, but I decided not to. Sickness is a part of life, and so I turned up, explained I might cough a bit, and carried on, with my bright, shiny face (in that blotchy way that only a cold produces) and red nose.

This afternoon, I found out that I got that job. I probably would have still gotten it if I had cancelled and seen them next week instead, but I might not have. Another candidate might have come along. Life might have thrown in some other curve ball. 

Putting on your best face can be tough, but it's also an opportunity to rise to the challenge. This time, I won.

What I really, really need.

Some of you may been aware that I have put on a bit of weight since dealing with my severe endometriosis. I've mentioned it a few times...ok maybe more than a few.  It's just not on really. As a bonus for being really, cripplingly ill, I also get the bonus prize that only a quarter of my clothes (the baggy stuff that's now the tight stuff) still fit me.

Today I went to my first exercise class in about eight months. I spent five whole minutes squeezing into my zip-up sports vest, straining to hold the zip together so that I could get it closed. I put on a pair of shorts so tight I felt like I was being sliced up the arse crack.

Still, I made it through the class, which was a great achievement.

And then I got home, and had to get the vest off again. Which brings me to the title of this post. What I really, really need, is someone to call specifically for zip related help.

Just last year, I got stuck in a dress. I actually had to cut it off in order to escape, and it was a harrowing experience. I was not too fat, it was the dress that was wrong. If there had been a handy clothes-escaper to call, that dress would have been saved.

And so, I ask all you entrepreneurs out there. Start a service. Put out some dedicated people who will be there when someone is stuck in a dress, or a piece of ill-advised sports-wear. Do it for all the clothes that people have to cut themselves out of, and for all of us that have nearly dislocated a shoulder in our struggle to be free.

It's the right thing to do.

No one likes a whiner

When you've been ill for a long time, or you have a condition from birth, you really have to be careful who you talk to about it. 

Let's say your back hurts, because you pulled a muscle. The first couple of days, you can get a lot of sympathy for that. If it still hurts a week later, you'll probably find people are getting tired of hearing about it. A month later, you better be cured or dead, because no one wants to listen to that any more. You're still in pain, and it's affecting you, but they are not in pain, and they can't really relate to you. They've run out of sympathy, suggestions, and are starting to think that you're just making a mountain out of a mole hill.

Luckily, there are other places to go to for support. If you keep dipping in to that same well of friends, you're just not going to get the responses that you need, and you'll end up angry, and they'll be annoyed.

If you check around for a local support group, chances are you'll find something, even if not exactly specific to your needs. My favourite place though is this:

Chronic Illness Support for All

I am not a big fan of the internet. I think it lends itself to people being crappy to each other, but groups like the above are a great reminder that people are also there for each other, and there to support complete strangers. That's something pretty cool, and for some, it's a real life saver.

The truth is, you're not whining. You have a right to complain, to be sad, to be angry. You just need to find the right people to help you back up. 

Living on Benefits

Unless you've been living under a rock, you've probably watched, or at least heard of or read about, the people living large on benefits. Making more money than they would from a job.

This has not been my personal experience. I didn't have a particularly high-earning job, but losing it and going onto benefits took a large chunk out of my income.

Because I was on sick leave as certified by a doctor, I got the sickness benefit of £200 per week. My rent alone is £140 per week. So you can already see that I am not filling up a bath with notes and taking elaborately staged selfies of my wealth.

 There were many things that had to be cut from my budget.

No more dresses. I had no job to wear nice dresses to anyway, so that wasn't so bad. I had gotten into the habit of buying one dress a month. I am majorly into dresses. I very rarely wore a skirt or trousers to work. No CDs. No books. No shoes. No fancy chocolates, another favourite treat. No more classes at the gym, or paying for the gym at all. That was replaced by a home work-out DVD. Meals out had to be cut down, as well as doing anything that required an entrance fee or otherwise cost money.

I am lucky in that I have long been a frugal person. I have never had much money, and I do my best to keep out of any kind of debt. I had learned years earlier the secret of buying in bulk whenever you can, and how to successfully shop the sales.

So, next time you see an article stating that all benefits claimants are wiping their arses with original Picasso sketches, I hope you might question the accuracy just a little.

I would also like to impart some of my incredible wisdom.

• Always buy toilet roll in packs of nine or bigger. You're always going to use it, so you'll get through it, even if it seems nuts buying all that loo roll for one person. You'll save £s.

• Never buy anything in the sale that you wouldn't buy if it was full price.

• Don't fall for buy 2 get one free. You'll end up with cupboards clogged full of stuff you don't need, that you purchased because it seemed like a really good deal. 

And lastly, the most important thing of all.  STAY AWAY FROM CREDIT CARDS. Stay away from store cards. Run from online ordering catalogues. Never, ever take out a pay day loan unless it's an absolute emergency.

I hate to end on a negative note, so, still on the theme of benefits, I bring you this cheery little cartoon, and an annoying platitude. Remember, things can only get better.

THINGS can only get BETTER  (click to receive injection of happiness)

 

Jean shopping - a woman's worst nightmare

Before I became horribly ill and started taking to my bed a lot, I used to be fit. Not just regular person fit, a person on their way to making fitness a cornerstone of their whole life sort of fit. I swam twice a week, I walked everywhere, I did zumba, rollerskating, badminton, dune trekking. And I loved it.

Since my operation on the 23rd, I have lost all control of the size of my stomach. It has now taken over. Half of my clothes don't fit, and those that do feel unflattering and tight.

Just before I am due to go away, the one pair of jeans I could still get in to has split at the thigh. Disaster. I went out to buy another pair, but of course all the jeans currently on sale are horrible, and not what I want. Worse, they don't bloody fit. As I kept getting larger and larger sizes brought to the changing room, I had a mini meltdown.

It did not end in me buying jeans. I'm going to sew the old ones up, and continue to wait for my stomach to stop being a blimp.

Guest post - When Chronic Illness Threatens to Steal Your Joy

   Joy and Illness seem like two words that shouldn't even belong in the same sentence together. They seem incompatible, like laughter and pain. I promise you though, you can live a life of chronic illness and even pain, and still have laughter and joy.  Not every moment. Everyone deserves to break down once in a while. We chronic pain sufferers even more so. But we have but one life to live and I plan to enjoy it the most that I can.  See, I knew something was wrong about eight years ago. I would come home home from work, plop down on the couch and hardly be able to get up again the rest of the evening.  I would wake in the morning feeling worse than when I when to bed the night before.  At this time I had no health insurance so I put off going to the doctor. It wasn't until I started sweating profusely and trembling violently that I finally went.  I was soon diagnosed with Fibromyalgia and Graves Disease (Overactive Thyroid).

Things kept changing for me, evolving, and soon my joints were burning. First my lower back and hips, then my shoulders, ankles, feet and hands.  Not too long later I was diagnosed with inflammatory arthritis, chronic migraines, and clinical depression.  

 

Pain soon became my close companion.  John Green was really on to something when he said "That's the thing about pain. It demands to be felt." Pain is continually bringing your mind back to the problem. That's the way God designed it.  Pain is a signal to bring your attention to a problem in your body that needs to be fixed.  But what if it can't be fixed? What if even doctors don't know how to treat your diseases? What are you left with? Pain. Your left with continual pain that is demanding you feel it and think about it. What happens when you are always thinking about your pain? You lose your joy, your love for life.  Here are a few of the ways I have fought to keep my joy.

 

Know your limitations. I would be lying if I said I wasn't still working on this.  I have, however, been better at setting boundaries for my children.  They now know that the mornings are a very painful time for mommy because my joints are stiff and sore and because of my fibromyalgia fatigue.  The boundary I have set for them in the morning is that I get at least one hour to myself to drink my coffee and to wait till my pain medicine kicks in and starts working.  They know not to disturb me or to ask for favors during this time.  Having autoimmune diseases leave you with probably less that half the energy a normal person has to work with during the day.  With three kids to take care of I almost always overdo it.  Many times by eight in the evening I am exhausted and can do nothing besides rest.  I also only plan one activity a day. Sometimes grocery shopping is all that I have the energy to commit to.  So I know that if I need to go shopping and someone asks me to do them a favor that requires lots of energy I just have to say no.  I cannot give what I do not have.  

 

Having a chronic illness or being disabled may require you to set new goals or dream new dreams.  If you had asked me ten years ago what my goal was I probably would have told you I wanted to be a business owner.  Now? I just want to be the best wife, mother, homemaker I can be.  You may have to change your life goals up now that you are ill but dreams, goals, and hope are so very important to your happiness now.  It gives you something to work towards, something to look forward to.  What am I trying to say? Never. Stop. Dreaming.

 

If there is something in your life that your are discontented with, make a change.  If your doctors aren't giving you the help you need, switch doctors.  My rheumatologist had tried only one drug for the arthritis is my joints, and when I told him it wasn't helping, he shrugged and told me that was all he could do for me.  This, to me, was unacceptable.  I have three children who depend on me to raise them.  I need to be able to get around as easily and pain free as possible. So what did I do? I switched to a new doctor who tried a different medicine for me that worked better.  I didn't want to do it because I had been going to him for five years and the next closest rheumatologist was over an hours drive away.  But only you know what you can and cannot live with and there are some times in life when change is necessary.

 

Don't tolerate negative people.  You know the ones.  The ones who are always criticizing you and everyone else.  I can't count how many times I would like for certain people to feel what it feels like to live in my body even just for a day. I had a family member that believed fibromyalgia was a made up condition.  She said I was fine and needed to go back to work.  I cannot tell you how angry this made me.  She really had no idea the internal hell I was going through on a daily basis.  I couldn't change her but I could change how much time I spent around her and I cut it back tremendously.  Judgemental people who only have time for you when they need you and expect you to drop everything at their whim have no place in your life healthy let alone unwell. Life is hard. It's hard well. It's even harder sick.  Do yourself a favor and be a friend and have friends that build each other up instead of tearing each other down. 

 

Don't forget to thank God for your blessings.  Sure your health may be poor but I'm willing to bet there are many good things in your life also.  There are blessings all around you if you will take the time to stop and look.  I do realize that we all have bad days sometimes.  Maybe we slept poorly or maybe we are in pain.  When all else fails I think you should do what you can to take your mind off it. Read a great book.  Snuggle and watch a scary movie with your favorite person (or pet!). Soak in a hot tub. Get out and do something fun with your friends.  Whatever it takes to get your mind off your problems.

 

Don't forget to invest back into yourself! Just because we are unwell does not mean that we aren't still women. Get your hair and nails done, put healthy food into your body and watch it transform into a slim new you! Buy yourself a new outfit.  You will feel better about yourself and you will find some of that joy and happiness that has been escaping you lately.  Just don't forget that you are still a women and you deserve to take care of yourself just as much as anyone else.                     

 

    ~  Courtney Diggs