Archive for the Week 09: Social Outings Category

Sunday’s Small Bite: Musical Chairs By Ricky

Posted in The Blogs By Ricky, Week 09: Social Outings on February 4, 2012 by Cookie Has A.S.

Once in a while I take a 150 mile / 3 hour trip up the motorway to my home town to see my family and friends. This is generally pretty exhausting work as I ferry from one household to the next, being fed biscuits and drinking tea at every stop. It’s a hard life I know!

This time was slightly different, given two reasons. Firstly it was the first time our new addition to the family had visited my home town. So in the most part everyone came to us and formed a somewhat disorderly queue, in which they proceeded to pinch my son’s chubby cheeks, and played baby pass the parcel as they each took turns to have a “cuddle”. After the novelty had wore off everyone proceeded with the main reason we had a family get together, and that was to celebrate my parents 30th wedding anniversary.

With all the family together the chatter started to get louder, the arguments got fuelled, and the young children caused mayhem. In short it quickly became a routine family get together.

Lately my Ankylosing Spondylitis (AS) hasn’t been playing nice, so the 3 hour drive didn’t make it too much happier. Having a good sit down was certainly needed. Despite the abundance of chairs at my parents house, with a family as large as mine they soon get taken up. After the buffet the musical chairs began. Here lay my conundrum, who would take the last chair? The young pained AS family member, or the pension aged osteoarthritis family member? Tough call.

What would you do? Flip a coin? Who gets the chair? Would politeness take over so you offer it away? Or would you agree on some time share option?

What would you do?

Hanging With The Handicapped By Kate

Posted in The Blogs By Kate, Week 09: Social Outings on September 5, 2011 by Cookie Has A.S.

What can I say about being mentally/physically disabled and chronically ill in regards to social outings? Well, not much, I suppose. At first having bipolar I was on and off a social butterfly, being completely outspoken and never afraid to approach or ask a question. I had my select group of friends to go out with until a lot of things changed in my life. My bipolar disease worsened, causing me to become reclusive. I was eventually diagnosed with ankylosing spondylitis, which created too much fatigue and severe pain on days to get out of bed or the house. I have since gotten the bipolar under control and feel more of a normalcy than in the past which is beneficial but my AS sadly seems to be having increasing flares over time and worsening pain when the flares come on.

So getting out of the house is a rarity unless it’s to a doctor’s appointment and when I do get out it’s very spontaneous which drives my family absolutely bonkers. I have learned to have to live spontaneously and even on bad days have had to reschedule doctor’s appointments only to aggravate offices without meaning to. You might think they understand but 8 out of 10 times they don’t and they really don’t care but I don’t blame them, they are a business too not just there for free. Maybe that isn’t compassionate of me but I have to see their point too, I suppose. I have three calendars I keep, one on the fridge, one in my purse and one on my desk and they are all to keep up with the multiple appointments I have for my whole family. It does get hard some months as we have many visits but we somehow work it out even if we have to move things to other months or cancel things altogether. You have to pick and choose what’s important to treat when you are sick sometimes, unfortunately. I love to spend the afternoon shopping with my daughter on those outings. This is my most favorite time of all but also my most trying and requires pain medicine for two days usually afterward, but it’s totally worth it. The quality time we spend together is something I will always cherish.

I wish I could be that social, outgoing, butterfly again but unfortunately I have had to change and well, I hate change but I am living with it.

My Disabled Parking Spot Is A Micro By Dana

Posted in The Blogs By Dana, Week 09: Social Outings on September 5, 2011 by Cookie Has A.S.

My heart races, my palms sweat, and I worry about how long I will last. Will I feel well enough to make it through a full dinner, sitting in a chair at a table in a restaurant?  Will there be a place to sit at the party we are attending? What is the parking like? Do we park on the street; will it be a close enough spot so I won’t have to walk far? Can I wear my awesome new shoes, or will I be stuck standing in the corner praying that we leave soon so I can cut my feet out of my shoes? The history of my family’s nationality is Italian (Sicilian), Irish, German, and my very own history is that I was born on Nov. 3rd, making me a Scorpio, born in the year of the Tiger. What does all that mean? Well, I’m normally outgoing, happy, funny, everybody knows me, the life of the party, easy-going, and loud!

I was always the person that loved a party. I enjoyed throwing a party and going to one. I still do, but just not the same as I did years ago. I was even thrilled with the prepping for the party; still am, but it’s so different now. I used to decide last minute to have friends over, or I’d jump at the chance to go over to a friend’s spur of the moment. First of all, so much planning is involved just in my day-to-day life now that adding any new tasks, activities, etc. involves extensive planning. Besides extra planning, I also have to take into account that I will need to set aside more rest periods and break because I will be doing more in the time allotted for my normal activities of the day. I can’t add more time to my day. That would be perfect!

Usually with social outings, I want to look good. If we are going out, I want to take some time to fix my hair and make-up and put on an outfit that makes me look confident, strong, will make heads turn, and so people will be talking about me the next day (and not about the fact that I limp, the size of my scar on my right arm, if I look like I’m getting enough sleep, about my weight–up or down–or their opinion about the status of my arthritis and physical condition in general). I want people to talk about me as a person, as Dana, not as my chronic illnesses. I want them to notice how awesome I am and like me for me! That is what I look forward to when we have social outings. That is why I love to go out with my hubby and friends. I forget about being sick for a brief moment. Others see me for me. Problem is that my illnesses are a part of who I am, and they don’t go away just because I forget about them for a while. I am not my chronic illnesses; they are not me; but we are partners in a sense.

Certain things that others may take for granted, I have to struggle with daily. I can choose not to wear make-up which is a lot easier for me because it is painful for my hands, fingers and wrists to put on make-up. Normally, I just wash and brush my hair and then let it dry~easy shmeezy! When we are getting ready to go out somewhere, I have to one-up myself. Make-up application can be a painful procedure, but when I have a psoriasis flare, which I have been struggling with for almost 4 months now since June, I have to deal with how to apply my make-up. It is a difficult process, a tedious one and requires several careful steps. First, I wash my face with a gentle scrub to remove as many skin flakes as possible, and the gentle scrub doesn’t irritate the skin. I pat my face dry, and then I apply a moisturizer for eczema/psoriasis prone skin. I let that soak in a bit. Then I apply my psoriasis steroid lotion. It’s thin so make-up goes over it pretty easily. I use all Physician’s Formula products for my make-up and apply a very thin layer of green pre-treatment to cover the redness. Then I apply a thin layer of light liquid foundation. Then I use a powder that is translucent with yellows and greens in it to again cover any redness that is still visible. Then I use a buff beige or creamy natural colored powder compact. I brush gently over my entire face to remove any excess powder. Then I apply a light bronzer to bring a little life and light back into my skin. Then I add some rose colored blush to my cheeks and eyelids. Then I am done. I still am flaky a bit, and I still have some redness and itchy/painful skin, but the difference is like night and day!

Then there is the hair…I usually am so worn out from doing my make-up, that I don’t have much strength left in me to do much to my hair. I have straight hair, but I use a flat iron to flip the ends out or curl them under. I also curl my bangs under with it. I have a long, asymmetrical hair style with bangs. It is pretty simple to style. It looks pretty when I use the flat iron, and as long as I am caught up with coloring my hair (dark auburn), I’m good. If my hair needs to be dyed, I use Clairol’s Natural Instincts 30R. Otherwise, if I fall behind, I have gray roots. I just experienced that, and I do NOT want to go there AGAIN!!!! All my roots are so gray now, almost white. They are so coarse and break easily. Some are about an inch long from the root and stick straight up from my part. OMG! They are so noticeable. I used to pull the gray hairs out before a social outing. Now, there are too many to count let alone pull out.

With my horrible psoriasis flare, I couldn’t dye my hair because it was on my scalp. I didn’t want to put any chemicals on my head with open sores and wounds from the psoriasis rash on my scalp. That would be all I needed~an infection on top of the psoriasis. So I waited and waited for the scalp to clear up. The first day that the scalp was clear of the psoriasis, I tore open a box of Clairol’s Natural Instincts, and away I went with the application!  Funny bit of info~the only time I wear my contacts is for a really elegant event like a wedding or gala…… AND…..when I dye my hair. Why?…because I can’t see but a couple inches in front of my face. I wear glasses all the time. I have contacts for those special events, but I really can’t wear contacts because of the Sjogren’s. I make next to no tears at all. The tears that I do make do not contain the oily lubricant. They are just salt water. Just thought I would give ya that little bit of info about me. Kinda funny I think. Most people would take their contacts out for fear they might get the dye in their eyes and get it under their contacts. I put my contacts in specifically for the dye-job. Hmmm….hope I didn’t just jinx myself. I haven’t gotten any in my eyes yet…

So for me, social outings can be fun, but in order for me to enjoy myself, I have to be fully prepared. I have to be fully rested. Not only for the party, but rested enough to prepare for the party to have enough energy for the prep and for the party itself. I also need to remember that prep might include my getting ready, food preparation, cleaning and straightening our home, decorating, and now that I have a baby, getting him dressed and ready for the outing or for the babysitter. Wow, just by putting it all in writing makes me exhausted!

I really wish that my family and friends that see me at these social outings and events could walk in my shoes for a day or a week or a month. ( I really, REALLY wish if they walked in my shoes for a while that during that time, I could borrow their shoes and switch places and be normal for a bit. Phew. That would be such a relief!) Sometimes it is so hard to imagine what it takes for someone who is in chronic pain, who has several chronic illnesses at once to deal with, is disabled and on top of it all has a baby! Now I know I chose to have a baby. Don’t write any comments about that little, teeny, tiny part of the sentence. I am just expressing to those that are not chronic babes out there everything we deal with on top of a life as a mommy, which is fairly normal. We do have the right to live a life like those that are fairly normal. I hope you all agree with that!

That is why we will go through hell to cook and clean, and put layer upon layer of  pre-treatment and make-up, dye our coarse, gray hair (most likely caused from all the medications and anesthesia). We want to enjoy our lives. We need the social interaction, whether it is with healthy, “normal” people, or with people that are going through similar chronic conditions like us.

I don’t always go to social outings with “normal” people. I also go out with my “like” friends. Although I like the social outings that take my mind off being sick and help me feel normal for a moment, I also actually enjoy going out with my “like” friends to be myself in another direction completely. Those are the social outings when I don’t have the energy to cover the psoriasis, and have my gray roots that are 2 inches thick. We limp along together, and sometimes get looks from others. These are the social outings that others look at me for me when I DON’T look good. This is when my illness is not so invisible, and for once in a great while I look sick. I have a few “normal” friends that I can show this side of me with when we go to social outings, but with most I prefer to hide as much of the chronic side of me that I can when we are in public shopping, partying, having dinner, celebrating, or whatever we are enjoying together.

Sadly, many people who say they love you no matter what, will be a shoulder for you to cry, will hold your hair while you get sick from your chemo, will have a pajama day with you everyday whereby no one wears any make-up or does their hair; but the moment you are invited to an important social event together, they do not want to be seen with you if you are not going to be able to do something about covering up that skin condition (psoriasis) that looks like the horrible acne you had back in high school. They don’t understand why you won’t go ahead and cover your grays with the dye. Psoriasis is “just really dry skin on your scalp, right? So how could dye harm it?” They don’t want to take the time to understand your illness, so they just make assumptions which are incorrect, and as I was always told about when you assume, you make an ASS out of U and ME! Psoriasis is not acne. When it is on the face, it does resemble it. It can be severe. It can bleed. It can scab and scar. It can look like raw meat and pizza face like the awful names kids called each other in high school with severe acne, but it is not acne. It is not caused from being dirty. Washing your face more will not clear up your skin. These are all things that have happened to me, real things that people have said to me, actual words from “normal” people who are not sick. These are hurtful things. This is why it can be hard sometimes to go to social outings with “normal” people, and why it is a lot easier to go with “like” chronic babes!

This isn’t always the case though. I just want to stress that I do enjoy going out with my “normal” friends that treat me like a person, like I mentioned in the beginning of this blog post. That is why I am able to forget for the moment that I’m sick. They treat me like I’m not sick. That is what is so fun about it. I get all dressed up and spiffy, and then my “normal” friends treat me normal! So ya see, it is hard for us chronic babes to live in both worlds. Best case scenario is to be able to bounce in and out of both worlds from the “normal” world back into our “chronic” world. It takes practice, and trial and error. Find what pace works best for you, and how often you can leave your chronic world to go to “normal” social outings. Also, make sure that you are treated equally in the “normal” world. If you aren’t, it isn’t worth your time and effort. You would be using a lot of energy preparing to go and then actually attending for something that you would be getting nothing but heartache and pain from.

It makes me think of all the times that I park in my disabled parking spot…

So many times I have gotten out of the car, and someone has said to me not to park in a disabled spot because it was for someone that needed it. Each time, the person thought there was nothing wrong with me to cause me to park in a disabled spot. Of course, I have many, many things wrong with me physically, and in fact, have 2 joint replacements, and I am awaiting the collapse of 4 other ones at any moment to then have them replaced. There are some days that are better days (I rarely use  the term good days), and on these days, I may still park in a disabled spot (because I am still disabled even if I’m having a better day), but I will most likely have my make-up on, be dressed nicely, and have my hair done and dyed! On bad days, I again will be in the disabled spot, but on those particular days, I will very likely be in sweats or lounge wear, will have no make-up on, and will definitely have my hair in a ponytail with my bangs clipped back. The disabled parking spot is a microcosm of my life in regards to social outings and how people look at me and treat me when I go out.

Social Gatherings By Jackie

Posted in The Blogs By Jackie, Week 09: Social Outings on September 5, 2011 by Cookie Has A.S.
Those two words are such a mine field social outings – I have a vague memory of cinema, of theatre, of parties…………
 
Let’s start at the beginning;
can we plan them? …….only if your friends truly do understand the problems and are prepared for possible last minute cancellations, so that’s when I usually think maybe easier not to bother than risk being a nuisance.
 
Decision made to make a date to go out, but before we can finalise the arrangements we need to know: how to get there, and home again. So we have to be certain that we can easily get a taxi to get home later, and is a bus possible to get there, or will that need to be a taxi too? All adds to the cost! Also adds to the fatigue if there is much travelling. If someone offers to pick you up, will they realise you need to get in a front seat and have plenty of leg room. Can’t bend and twist to get in back, and if someone in the back they had better have short legs, or maybe just not bother as being such a nuisance.
 
If like me, you have had to retire from working, then the cost of any outing is an important factor now. Taxis can add a huge amount, cinemas, theatres, are all expensive these days, so an outing which you may not even enjoy can make a considerable dent in your finances, maybe just not bother then.
 
When we get there, depending on where we are going, are we guaranteed a seat? Is it a seat we will be comfortable to sit in for the evening? Is it one we will be able to get out of with any degree of elegance? You can, of course then be thought of as stand offish if you manage to get a comfy seat and don’t mingle- I used to joke that I needed my throne so everyone could come to me! But then again maybe just not bother instead of being a nuisance.
 
Assuming we will have a drink, will it be in a glass we can drink from? I have fused neck and little movement so the glass is important – or just give me a straw!!  A champagne flute for example, is a nightmare….. So if it’s a party with everyone standing with a champagne flute and a plate with nibbles. I’d better not go just in case I am a nuisance.
 
What to wear? I don’t have  many “Dressy” clothes these days as I don’t go out, but depending on what the outing is for will dictate what to wear to be comfy, to allow for sitting for a long time, to allow for some inelegant getting out of chairs etc then again, maybe not bother in case I am a nuisance.
 
In fact my social life is made up of going to a shopping centre with my mum once or twice a week, depending on how I am and the weather. The shopping centre is all on one level and plenty of seats throughout. Also I can get a trolley as I go in and keep in though all the shops, so nothing to carry.
 
The other exciting excursions are medical ones, to doctor, to hospitals, and sometimes, like this week, 2 in one day!!
 
Then, the most regular social life I have is with my twitter and FB friends. I chat with some of them every day. I don’t have to worry about what I look like, what the seating is like, can I drink from the glass. This could be construed as being a bit  lazy, I agree, but as all my friends are working, and all have busy lives of their own, and as I find I am not good in being with a group of people these days, it is a life saver for me. 
 
I am here for people to visit, but that’s not a very exciting prospect when people have been working hard all week, and people just stop asking me out as I always refuse, however I could go visit them during the day, but they only have daytime at the weekend and they have busy lives. I also don’t have to rush around cleaning and tidying in preparation for visits, not that friends are critical, it’s me that knows what I would like to do, what I can’t do, what I always feel I have to apologise for. Of course if I run around doing what I think I can cope with there is always the chance that I will be so knackered I am not up to having them round.
 
In my bleakest days I feel all I do is sit, on my own, with cat (S) reading or watching TV, except going to the Gyle (shopping centre) and looking round M&S.  When I am in the house, I look around and see the shabbiness and it is depressing and I know I can’t do it myself, and I have no one to do it for me, if I pay for someone to do it for me, the money will not be made up again anytime soon due to my situation, so can I live with it or not, does it matter or not as rarely does anyone else see it.
 
 Is this living? Or is this just existing? My answer varies from day to day, right now, as I have been sitting here a while typing so my knuckles have swollen up, my back and neck are aching from sitting in the same position, in honesty I don’t know.

Sleep, Friendships, Social Gatherings And A.S. By Meloni

Posted in The Blogs By Meloni, Week 07: Sleep, Week 08: Friendships, Week 09: Social Outings on September 5, 2011 by Cookie Has A.S.

So, I’m literally cheating right now.

I’m part of an ankylosing spondylitis blog group

and I’m several blogs behind

and yep-I’m combining them to catch up!

Because I literally been in a BLOG FOG!

So the first item is sleep-which I now think should’ve been a 4-letter word! Those of us who are in pain 24-7 don’t really “sleep”. Have you ever woke from your sound sleep because you’re hurting? Maybe you moved and something all the sudden felt like a KNIFE stabbed you? Well, I have and do all the time. My eye even hurts and wakes me up. MY EYE THAT’S CLOSED! So, sleep is not something we “really” do. We try and rest every now and then, and even that’s hard! OK-so what happens when we need some sleep or have a lack of sleep? We get ill! Not sick ill, but cranky! Hence the reason we’re sometimes a bit short and snappy. But, folks don’t realize that. They just think we’re rude or something. You try going without sleep for days, weeks, months, YEARS!

Friendships–sometimes it’s just best to not have them. They don’t really understand. So, my “close” friends are few. I have those few (very few) that I can call on the way home from the doctor and cry or share how I’m feeling and they listen. They do try to understand, but I know you can’t understand “things” that you haven’t gone through yourself. I am thankful for those “few” that I have and love them dearly! DW and T–I love ya’ll sooo! As for “couple friends”–you know the married couples that you and your spouse do “stuff” with. Hmm…we have a few of those, I wouldn’t say close though—but my outings are few.

Which leads right to, social outings! We LOVE doing things and going out. But, my time is short. I can’t do what I could before AS. I’m finding “outings” have to now be timed around my infusion. Like the week or two after that I can actually function–not a normal functioning–but function. Because if something comes up when I’m in week 4…forget it! All I’m thinking about is how much I need that infusion and could it hurry and get here. So, for the most part, my outings will be focused on what my kids are doing. I have to pick and chose what I do and know that some of the things I do chose are going to put me down for a day! Oh, and that’s not sleeping, it’s a day of rest. I call them time-outs!

So, here’s the deal with sleep, friendships and social outings–are you going to be all upset when I cancel because of how bad I’m doing at that hour before something is planned? Then it’s not worth you being my friend, because it’s going to happen. Just recently my sister wanted to take me to lunch for my birthday–I called her 30 min before we were supposed to meet to let her know, I’m not feeling good and can we do it another day?….she understands-would you? Most don’t understand. They all the sudden get the “oh, she always cancels attitude” and then they stop inviting. We’ll that’s not what a “true” friend does. A “true” friend tries to gather all the knowledge they can on ankylosing spondylitis so they can understand a little of what I go through.

Do you know someone with a chronic disease? What have you done for them? Do you even try? Have you ever said- hey “you’re feeling bad today?, we’ll how about I bring over some dinner”. Maybe clean their house. Or pick up their children? Send a card letting them know you’re thinking of them. Or simply, I’ll be praying for you and I’m sorry. Most acquaintances simply stop “acquainting”. They can’t understand nor do they want to try, so it’s just best to not be “friends”.

I’ve learned a LOT about how I should’ve acted all through my life–because I’ve always known people with chronic illnesses. We are all just so busy with our own lives, it’s hard to really stop and all the sudden walk very slowly beside someone with a “disease”. There are only a few people who will slow down for a disease ridden friend. If you’ve read this far, maybe you are that person–I’m not saying come clean my house or bring me some food–hahaha But, you know others–people who are in need. Can you help them today? Is there one little thing that you could slow down and do for them today?

AS has my body, but NOT me!

Calendar Girl By Cookie

Posted in The Blogs By Cookie, Week 09: Social Outings on September 5, 2011 by Cookie Has A.S.

 

Mark your calendars it’s a date!Appointment books, calendars

and

notebooks keep my life on tract.

Doctor appointment: check calendar!

Notebook: remember to call ….

Spend the day with family: check calendar!

Notebook: ask doctor about….

 Clean house: check calendar!

Notebook: things to discuss with hubby….

Grocery shop: check calendar!

Notebook: Nanny don’t forget….

Date with hubby: check calendar!

Schedule.    Scheduled!    Scheduled?

Sometimes I feel like I should be covered in ink.

From all the notes I jot down

and the calendars I check off

just to keep my life organized

and

my stress level easier to deal with.

       Schedule.    Schedule!    Schedule?

I keep a  notebook and calendar

on the counter at all times.

I feel like I should be a calendar girl!

Wouldn’t life be grand if you had a crystal ball?

You could tell the future.

Just think, you would know ahead of time

when days are going to be good or bad.

Then you could plan when you

want to be

SPONTANEOUS!

I miss being spontaneous the most.

I miss living.

I mean Living my life.

Ankylosing Spondylitis has

taken the spontaneity out of my life.

This disease has robbed me of many small freedoms,

that I used to take for granted.

The weight of this disease is

unbearable at times.

I miss the freedom of grabbing the telephone.

Calling a friend and saying hey lets meet for lunch!

Ankylosing Spondylitis has to be picture perfect.

Before you are able to run out the door and have fun!

There are so many things we have to make sure of

that “normal” people have no clue about.

One of the things  I can’t be

spontaneous about anymore is bath time!

I am not allowed (hubby’s rule of course)

to get in the tub UNLESS he is home!

Seems he has issues with me falling.

( We won’t go into how this rule was decided!)

Things I  worry about

 toes painted,

legs shaved,

hair washed,

and on and on.

THEN

 and

 only then

am I ready to be

SPONTANEOUS!

One thing I used to take for granted

was clean clothes.

No worry!

There were ALWAYS clean clothes.

Now it’s like world war three

between that washer and me!

Even if you are lucky enough

to have all the clothes washed.

Will you find something

you can be comfortable in

Today?

Clothes for me have become painful.

They feel like they weigh a hundred pounds.

They hurt my raw skin.

They hurt my hips.

Sometimes I struggle to breathe.

Pure torture.

 Shoes?

We won’t even discuss that.

My style of shoes

are flip flops.

Heels hurt my back.

Tennis shoes can’t tie them.

Shoes hurt my feet.

Shoes hurt my heels.

So flip-flops

are my new best friend.

and

I can’t stand them!

There are so many things

you have to consider

when you go out,

 that never cross other people’s minds.

 Every day outings are difficult.

Doctor appointments.

Running errands.

Grocery shopping.

Ankylosing Spondylitis causes even

the smallest of outings to

seem like a circus show!

It isn’t a life of simply grab

your keys and run out the door.

Takes planning, tools, and being prepared

before you can adventure out.

First you have to find out:

Where are you going?

Who is driving?

Are you able to

GET

 in the other person’s car?

Then you have to wonder about

how long  it takes to get there.

Will there be difficulties in your route,

that place you in harm’s way

if you are driving.

Will you be able to ride comfortably

in their car or for that amount of time? 

 Something to worry about

when dealing with

Ankylosing Spondylitis

is how much pain

will you be in when you get there.

 Then you have to

worry about parking.

Will you find a handicap space

or

one at a distance you can manage

after the difficult ride in the car.

People have no idea how far

a hundred  feet can be

for someone who is in pain

every step of the way.

The biggest thing you have to consider

is the social outing it’s self.

Family gathering?

Day with the kids?

Movies?

Is it an activity you can even manage?

Are you in too much pain?

Are you coordinated enough to do it?

Physically able to?

Mentally willing to try?

Too fatigued?

So many questions surround every part of our day.

 Living in Texas

our world consists of

Bar Be Ques

family picnics

any thing out doors.

That is the hardest for me.

The heat is difficult for me to deal with.

I worry about the

lawn chairs mostly.

Can I sit in it? Will I hurt sitting in it?

Will I be able to get out of it?

Will I look like a fool?

Will there be a place I can sit

comfortably and eat?

If there isn’t a table for me to sit at.

I will not eat.

I struggle eating food from a plate on my lap.

 I don’t even bother, it’s too much of a hassle.

I’ve always loved picnics.

That is a dream of the past now.

I can’t get up and down off the ground.

I can’t get my legs to work to sit on the ground.

I am unable to sit without back support.

Life is no picnic for people with Ankylosing Spondylitis.

 One of my biggest challenges with

social outings for me,  beside the car issue,

is the type of seating I will have to deal with.

Movie theatre seats kill me.

I can’t lean back and watch, so I sit straight up.

Restaurants are difficult, booth or chair?

Large table or small table?

Friend’s gatherings are standing room

for me most of the time.

 Ankylosing Spondylitis

has caused a lot of obstacles for me

when I leave my home.

Many times when I decline,

my family or friends

I feel like a witch,

because

I don’t have the energy

or I hurt to much to try.

 Ankylosing Spondylitis

isolates us from the people in our lives

and from living our lives.

I spend a lot of  my time alone.

 On those wonderful occasions when every thing is good,

and I can mark off things on my mental checklist,

and enjoy time with family

or friends or a special treat just for me.

Those are the days of my life that I treasure

and help me through difficult times.

I think people fail to realise

how difficult a simple task can be

for a person with Ankylosing Spondylitis.

How hard, painful and stressful

it can be for us to go on outings.

It takes a toll on us physically, and emotionally

and sometimes the price we pay is very steep.

Some days are so difficult and painful

you wonder why you got out of bed.

My new year’s resolution this year

was to be my own best friend,

to encourage my self to do more things,

to take better care of my self

but most of all to love my self enough

to remember I am worth the extra effort

 that it takes to live my life.

To remember

 every single outing

every single day

no matter if they’re

good or bad

is still a gift.

A gift I intend to enjoy to the best of my ability.

Success is never final. Failure is never fatal.

It is the courage to continue that matters most.

 These beautiful calendar pin-up girls

are the work of

Gil Elvgren.

 Calendar Girl By Neil Sedaka

 http://www.youtube.com/watch?v=-V03f74P4_o