A Little Hello

It’s amazing, you come back from holiday and everyone says how well you look but the turmoil going on inside isn’t the same as the picture that’s obviously painted on the outside.  The sunshine did do me the world of good, I now know that if I had a choice I would spend my winter months in Florida.  The joint pain decreased significantly to the point I managed to walk, slowly and only short distances but I did it!! This for me was a huge achievement and made me smile whenever I was able to say no to the chair, to walk arm in arm with Andrew once again as husband and wife meant so much.  The sadness to return home and within days of the cold weather hitting my skin, the agony was back and so was my carriage.

The biggest issue I had overseas was my Gastroparesis, the constant variation of food did little for my GI system.  I persevered through all the pain eating caused with the mindset that I was to gain at least half a stone.  I ate everything I possibly could for a woman who is a US size zero, so my portion sizes are small but I tried to ensure the calorific value was high.  I struggled with every issue going during my two weeks away and we spent quite a bit of time in Walgreen getting medication 😳 So on my final day we went to our friends house and I got Andrew to get her bathroom scales, this was it, the big test.  I jumped on and …. I had gained 1lb!  One flaming pound, so we went for lunch and I ate something else knowing this was a waste of time.  No matter what I eat, the calories aren’t being transferred into weight, I was pretty gutted but I’m due to discuss with my GI consultant what next.

Then there is my skin tone, my freckles have made an appearance, so for now I look a little less sick.  The Vitamin D always helps lift my mood generally at this time of year and gets me through our tough winters.  We encountered various stresses and strains during our time away and shortly after our return, sadly this has impacted both my mood and stress levels.  It’s causing a rise in pain levels, flare up of symptoms and insomnia, why is life never simple for us?  

Since returning despite flaring I have been feeling rough but refused to have bed days.  EDS is really getting on my wick now, my patience is running out, I’m fed up with my Doctors indecision, my continual appointments and there never being any improvement.  I feel I need to take charge, if I take control of this then I’ve only got myself to blame.  

Since getting home we’ve had two concerts, two hospital appointments and a GP appointment …. I’ve only been back ten days !!  I will tell you more about what’s going on in future posts but needless to say enough is enough of this constant traveling to and from hospitals, the stress in itself is taking its toll !

So that’s a quick update on what’s going on, Andrew is busy as we head into silly season with parties and Christmas, so I will get to enjoy more quiet evenings with the cats.  We can then plan 2016 and hope that it is kinder than this year has been to us.

If Found Return To Sender

  That would be my voice I’m talking about!!  On Saturday night my throat felt a bit strange, I sounded a bit hoarse and by the time I woke up Sunday morning nothing, I’m speaking with a whisper or occasionally a squeak.

No sore throat, no swollen glands, just one missing voice and probably a happy husband!!

Fingers crossed it will be back very soon, so not only am I the lady in the wheelchair, I’m the mute lady in the wheelchair, oh well at least Andrew’s enjoying quiet time 😜

Being on Holiday and EDS

We are five days into our holiday and what a difference those five days have made symptomatically.  As far as the joint pain goes, my general pain level is good, I put it down to the heat, sun and humidity.  My hands, feet and general aches are much much better.  My shoulder however isn’t great I’ve had to propel my chair on several occasions and this has aggravated it.  My hips/SI joint is still popping in and out and this just causes a dull ache and I know when I need to flex my pelvis to align everything.  Apart from that joint pain is good in my opinion.

My gastrointestinal problems are all over the place, eating rich food and drinking different water always affects tummies no matter how sensitive they are.  Mine seems to have just stopped working and I’m finding eating a real chore, which in the land of “Fast Food” is an issue.  I’m trying to eat a little bit and often but even some breakfast will fill me up all day!

The worst symptom of all is my PoTs due to the heat and humidity the breathlessness, high heart rate and dizziness are really out of control.  I’ve been trying my best to walk about a little but due to my PoTs it’s proving impossible, even a little strain on my heart is causing palpitations so I’ve got to take it easy.

All in all, I think the holiday is a positive experience because lessening the pain is a great thing, over time the other two symptoms can be worked on.  I am really worried about coming back to the UK this time, I know the pain is going to be horrific in my joints, this in turn makes me snappy and irritable.  I don’t mean to be but its the bigger impact it has on the whole family.

So for now I’m enjoying this reduced pain experience, the increased sleep, the improved mood and hopefully in a few days the other symptoms will lessen.

The Ash Cooper Band Bear

If you are my friend on Facebook you will notice this holiday my photos follow one theme, they have a little bear in them, The Ash Cooper Band bear.  I have renamed him Coops, but he is usually called Boris.

By nature he is a very naughty little bear but this fortunate little one has come on holiday with me, a little bear adventure.

Why am I doing this?  I’m bored of all the traditional holiday photos, so thought this would be fun, not just our lake, or the pool, but Coops doing something different!

So yes I maybe slightly bonkers but it’s a little bit of fun, please remember that and allow me my little bit of fun 😜

Sarah & Coops xx

Orlando Bound

We made it off the flight quickly, we decided that if we didn’t make the connection then hey ho!!  On speaking to the young lady in the row behind us, who was also heading to Orlando there were about 45 additional passengers from our flight due on that plane, so they intended to hold the flight. This made me feel better.  

As usual immigration was a breeze, two minutes later we were through and waiting for luggage along with the rest of the flight.  Bags collected and then rechecked, we had to pass through TSA security checks.  Sadly due to my frozen shoulder I couldn’t go through their full body scanner, so needed a pat down.  Now this is where it all went wrong.  I had the trainee agent who had never experienced a wheelchair user and after fifteen minutes, I asked her tutor, where gate A68 was, she asked when our flight was.  Ten minutes I explained, she told us how to get there and with that pretty much released me.  We followed her instructions, jumped on the tram and within five minutes were in the right place.  As we neared the gate I was sure we were safe but as we rounded the corner despite the screen showing that our flight was boarding, the door to the ramp was closed.  

The plane was still there, we had missed this by two minutes, in fact the doors to the aircraft hadn’t been closed but we couldn’t get down the ramp so there was nothing we could do.  The first agent to the desk, a rude and unhelpful male pretty much ignored us.  Next the door opened and three agents came out, Andrew let his feelings be know and just stepped back from the counter.  I sat there waiting for their decision on what next?  After several minutes one of the ladies spoke, she apologized, they hadn’t been told of the hold up at the TSA hence hadn’t waited for us.  She rebooked us on the next flight and gave us $15 each meal vouchers, so we could have some dinner while waiting.  We appreciated her kind offer and accepted them gratefully.

We went for a wander up and down the airport, we had three hours to kill after all, then decided to stop at the Longhorn Steakhouse for a bite to eat and a beer.  This was a great decision!  The food was not only plentiful but the time soon disappeared and we needed to head to the gate.

As we got their, the agents were looking for us, they took our boarding passes away and gave us another set.  We received a complementary upgrade to Economy Comfort, that was appreciated too!  It was a short flight and two hours later we were in Orlando, picking up our hire car, once again, they had been really busy, so we got a free upgrade on the car.

So despite a few hiccups we actually did ok out of the issues.  Now we are here we just need to make the most of the holiday and enjoy it!

I Did It !!

By resting and cancelling appointments, not attending a gig that I really wanted to go to I made myself well enough to go away.  Although to be fair even after two horrible descents I’m not sure I should have flown.

The week was boring and stressful, ringing hospitals, doctors and changing everything around because my body just couldn’t cope with recent event but toward the end of the week I realized I had done the right thing.  I was well enough to go and do a few last minute bits with Andrew and pack my own case, these in themselves for me are major achievements.  

The day before we flew the fog descended over the UK, I thought nothing of it, until someone said they hoped it didn’t affect our flight.  Then we checked, 50 flights alone cancelled that Sunday!!  The forecast showing more fog the next day.  Having been unable to check in online we just head to the airport early.  Traffic was chaotic on the motorway, so by the time we arrived we weren’t that early.  We checked in at the special assistance line and once again thanks to a super efficient service from Virgin Atlantic.  We went for breakfast and just had to wait for our gate to open. We boarded on time and once some seat juggling had been done, the waiting started.  I felt we were one of the lucky ones, 60 flights were cancelled that day, we only had a hour and a half delay.  I could hear the tuts and groans but felt like saying suck it up guys at least we are going!

And so our adventure could begin, yes it wasn’t going to be easy.  The pain is excruciating after an hour sitting in those seats, I had already got a tramadol prescription from my GP, so was planning on taking them at regular intervals.  I took the usual advice to hydrate well to stop my PoTs going into overdrive but that seemed to miss the memo, I stood to go to the bathroom and my HR was all over the place, so I tried to avoid getting up again.  The flight as seven hours, I dozed for an hour but the other six was spent fidgeting on very sore bones.  When we finally arrived in Detroit only ten minutes after our scheduled time as I stood the normal almighty crack from my SI joint allowed a little relief as everything settled back into place.

Now we had little over an hour would we make it to flight number two?