Feeling Very Low

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Today’s topic is an extremely delicate one for help and support on any matters relating to depression and suicide please contact The Samaritans their info is at the bottom of the page. Alternately see your doctor immediately if you are feeling depressed!

It’s ironic that a put a disclaimer like that but I don’t heed my own advice!

Isolation and loneliness was always a risk during the winter months. Even when we were away Andrew asked how I was going to cope with the cold and being in pain and we said I just wouldn’t leave the house. However. What happens then? People with their busy hectic lives forget about this lonely sick person “rotting” alone at home. And yes that’s how it feels.

Since we’ve been home, I’ve been poorly, then I managed to drag myself out of bed on a couple of occasions to try and be sociable. I wore myself out, which has then needed another couple of days of bed rest, a hospital procedure that has gone terribly wrong and now a few days at home drifting between bed and sofa due to pain levels, undecided what to do hospital, doctor, rest?

The critique has been that I could contact people, but as I mentioned before when the dark cloud descends you don’t ring up and say “Oh Hi I’m feeling really low and these tablets are luring me to take them all”. So who’s in the wrong?

Yesterday I hit rock bottom, I felt conspired against, I had nobody to turn to and that was a low point! One person was there for me … One person and I will be indebted she talked me down, I didn’t need the Samaritans despite having googled their number and was going to ring them, I was close. The tablets were laid out, I was ready, I was upset and hurting.

Like I said in the blog post the other day I’m sick of being sick. There never being a light at the end of my tunnel. Of diagnosis after diagnosis, every week another condition added just to make life that little bit harder. I don’t want sympathy, I want empathy. I don’t want fake friends, I want real friends!

So for the time being I’m down here at the bottom of this deep dark well of depression and I don’t know how to get out …. Do you?

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Flexible Sigmoidoscopy

This was one procedure I was not looking forward to, I’ve had them before and I know from experience I don’t tolerate them. When we went to the Stanmore they had said they would rather my care was taken over elsewhere but we hadn’t heard anything, so do we just let this appointment slide and not find out what’s going on inside? Or get on with it and hope for the best?

As usual I had an awful night, I was really worried, I flung myself about and by the time the alarm was nearly due to go off I was grateful to get out of bed. My appointment was at 10:15 but because of the PoTs I wasn’t allowed to do the bowel preparation, it causes too many issues with drops in blood pressure. So the plan was to give me an enema once I was on the ward. So we needed to be at the hospital by 9:15 so they could prep me for the procedure.

We got the hospital and booked in at reception, however when I was taken through this time by the nurse he didn’t let Andrew in. This made me anxious straight away, as he checked my vitals I was explaining what he was seeing was not normal for me. It was extremely high, he just wouldn’t listen to me. We then started to discuss my health and when we got onto Ehlers-Danlos and Postural Tachycardia I could have cried. He had never heard of either I needed to explain to him twice what they were, how they affected me and the risks. I explained the problems EDS sufferers have with sedation and he just didn’t get it. I was in tears by this point. I could have happily gone home and forgotten all about this, was it not for the seven stone weight loss, the gripping pain in my abdomen and the aversion to food. I needed to be brave, he asked if I needed to speak with my husband and I said yes.

I returned to reception, it was much busier by then and I was obviously flushed in the face. Andrews face was one of concern, he asked what was going on and I quickly explained what had happened. He said he wanted to speak to the Dr too before the procedure or I would be going home end of !!

They took me to the ward and started getting me organized, I was in so much pain, I’d had no tablets as I was nil by mouth, so the Dr was called anyway. I asked for Andrew to be bought in. Andrew arrived and was obviously worried, I was in pain and not well, they weren’t listening to my concerns. In fact they had no understanding of what I was talking about. Then the doctor arrived and firstly he asked about my pain, I explained I usually take high levels of co-codamol but due to the procedure had been unable to. He agreed to me taking them, in an attempt to get me more comfortable. I then mentioned the Ehlers-Danlos and my concerns that during the previous endoscope procedure (gastroscope) I had not been sedated enough and just been held down, therefore I would like extra sedation. If this wasn’t possible I would rather not have the procedure. I explained that EDS patients do not tolerate sedation or anesthesia well, he kept nodding but I’m not sure he got it! Was I reassured, well I had been listened to, Andrew was holding my hand, so I felt I had to trust the Dr!

An hour later I was finally taken in, the cannula put in, and when I said again please don’t forget extra sedation, they almost laughed. I felt woozy but not sedated! They started the sigmoidoscopy and I’m sad to say they didn’t get very far, they hurt me so much I begged them to stop. It had failed, they gave me a little pethidine for pain, but not enough sedation.

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They wheeled me back to the ward and I was wide awake, I can remember everything I saw the whole procedure on the screen. Why didn’t they listen?

So now what…. They have decided they probably need to do a full colonoscopy under a general anesthetic due to the level of pain. Funny that I told you I wouldn’t be able to tolerate the sedation.

I’m sick of being sick. I hate eating a meal knowing it’s going to hurt. I would love nothing more than to crave food, that hasn’t happened in over a year! I find social situations with food embarrassing and uncomfortable because I don’t do food or drink for that matter.

I’ve just called the hospital to find out when I can see my consultant to discuss getting the colonoscopy … His first appointment 22nd December, that’s before I even get put on a waiting list for the procedure. So for now as I sit here typing this I’m fed up, uncomfortable and wishing chronic illness would just naff off !!

I also turned to my fellow EDS sufferers for advice, what would they do, and they all said the same thing. Complain about what had happened, I had been treated badly, so I made contact with the hospital and put in a formal complaint. It may not get me anywhere but it might make me feel better knowing I fought for my corner!

Osteopenia

When we went to the Stanmore they carried out some X-rays to check me for any inflammatory features, what they found I wasn’t expecting, marked osteopenia.

It appears having my hysterectomy at 28 and then my ovaries removed seven years later requiring me to use HRT may have caused bone density issues. I have a fracture in my lumbar spine so this is already a concern for the GP. I went along the other day to discuss my concerns since I had received the follow up letter from the Stanmore delivering me this news.

I had two appointments one with the nurse to fit me with compression stockings to try and help relieve some of my PoTs symptoms and then the one an hour later with Dr Mason. He saw me early so I wasn’t hanging around and it also meant we had a little more time to discuss how things were going.

The last time we met was when I has hurt my shoulder, he commented how he read the discharge report and he felt there was no way it hadn’t been dislocated. I then started to explain about the osteopenia from the X-rays, he immediately said he would refer me for a scan. I had expected a battle but there wasn’t one, he bought the referral paperwork and we filled it out. I fitted a couple of the criteria and it needed doing.

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We finished off with the few other items and that was that but it was with a heavy heart I left the surgery, I’ve had too many diagnosis’ this past year, with osteopenia now being one step away from osteoporosis I just don’t need anything else. I can’t improve my diet either with all my gastric issues so I’m walking uncharted territory right now.

So hopefully it won’t be too long a wait to find out how “marked” the osteopenia is.

Three Years On

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26th November 2011, it’s a date that’s etched in my mind and probably will be forever. Or maybe at least until this headache goes away, if it ever goes away. That is that day my headache arrived, yes today is the anniversary of my headache turning up, not something I want to celebrate to be honest.

I can remember it so vividly too, it was a Saturday night I had finished work at the Police Enquiry Centre, Andrew was DJing, so I let myself into an empty house. I needed to iron a shirt for work the next day and as I was doing that it felt like I had been hit over the back of the head with a spade. That was that, the beginning of this whole episode of illness, ok it has taken three years to deteriorate to this level but it started so simply.

If anyone has said to me, your headache will last three years (or longer) I would never have believed them. Now having done research and spoken to people in the support groups, they have experienced New Persistent Daily Headaches for much longer, for in excess of decades, that is a depressing thought. Whilst some days I have it at a good 5/10 manageable level (for me) I don’t wish to live like this for the rest of my life, and I have told my neurologist this!

That sounds melodramatic what I’m trying to say is, I’m willing to give any remedy a go, in the early days we spent thousands on chiropractors (even though with hindsight it was probably really dangerous), relaxation, hypnotherapy, all the natural therapies, so maybe Botox is the way forward now, as I’m sick of taking so many drugs, it’s time to head back to the Neurologist and have a discussion about what next!

In the meantime it’s a not so happy anniversary to my headache, 3 years, or 1095 days and counting. Now please go away I’ve had enough of you!!

Making An Effort

As expected coming home was going to be hard, so when I crashed again it was a bit of a downer.  Friday was our wedding anniversary, 22 years and we had some plans, nothing major, but plans none the less.  However I woke up Friday morning in excruciating pain, this time it was my lower abdomen, where my appendix would have been, if I had an appendix!  I curled into a ball and when Andrew woke this is how he found me.  His initial response was call an ambulance but I refused to let him, I’m having a sigmoidoscopy this week, so could see little point in going to the hospital, knowing no processes would be sped up.  All the pain relief at home was super strong, so I felt it would be a case of trying to find the correct level of pain management here,  Andrew refused to go to work, in case I needed urgent medical attention, and our day was spent with me thrashing around in agony.

Towards the evening I felt I needed to get up, out of bed, I was still unable to eat, that was now 24 hours without solid food.  We sat downstairs and tried to enjoy a film but it was hard with me in so much pain.  Finally it was time to try and get some sleep, I dosed myself up on lots of medication and got a couple of hours sleep.

Next day I woke this time not only was I experiencing abdominal pain but I was now having chest pain.  I know it wasn’t a heart attack but I just needed to lay still and not panic.  Two hours later and the chest pains hadn’t subsided, now I was a little more concerned but I just doubled up my painkillers and I managed to numb the pain a little.  By mid afternoon we needed to make a decision about what to do, we had plans for this weekend and we had these plans in our diary for months!

As you are aware we love F1 and a lot of our friends are from Twitter.  One of these friends was turning 40 this weekend and we had been lucky enough to be invited to her birthday party, however half of Twitter was going too, but she wasn’t aware.  Now I wanted to go, I asked Andrew to come home early and help me start getting ready.  He gently eased me into a bath and as I washed I felt a little more human.  I decided that with the right dose of pain relief and my chair I would make it to the party.  I am so glad I did.  As we arrived the warm welcome I received from our Twitter buddies bought tears to my eyes, the hugs and kisses were fabulous.  So thank you every one of you, you are wonderful.  I was feeling so ill and down, but you lifted me up, and your warmth and kindness, got me through that evening.  We all had a great night and the birthday girl really loved her surprise party. So yes it was definitely worth the effort of getting out of bed, even though I felt like death warmed up!

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After another rough night, thanks to painsomnia, we were heading to Mercedes Benz World.  This was for the end of the F1 season over 40 fanatics were getting together to hopefully watch Lewis take the win and raise the World Drivers Championship too.  Again it would have been too easy to roll over and say not today dear I’m feeling rough.  I had my chair and Andrew’s support.  We arrived and from the minute we got there everyone knew me from twitter and this blog! <hello>

It was a fabulous day, we loved the race, the surroundings, meeting all the people from Twitter because its always nice to put a face to a name!  It might have been exhausting but we got to do what we love and that was watch F1 with like minded people, we were screaming and crying with joy as Lewis crossed the line, it wouldn’t have been the same if we had been sitting on the sofa just the two of us, and our iPads.  So making the effort is definitely worth it, even if I end up paying the price for the next few days.

I’m not sure how we fill the next few months without any races but roll on the 2015 season including testing, I sure as hell can’t wait.  To all my twitter friends thank you for being there, for reading my posts especially when we were in Singapore I hope you loved living the experience through my eyes.  Now where can I persuade Mr W to take me next year?

 

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Trying to Get Home

We checked out of the apartment at 11am on Monday morning, our plans were to go and see some friends for lunch.  We then needed to go to Harmony were she lived as we store a couple of boxes of belonging with her and these would need putting back in the garage.  Whilst there we wanted to see her new home, she is moving in the next month and we are all very excited.

We had a lovely chilled out meal, chatting easily and despite knowing it was our final few hours the mood was really light.  We had noticed on the weather forecast about some really bad storms heading our way, infact there was a “tornado watch” for our area.  I have never been in Orlando for one of these so was a little bit unnerved.  Suddenly this might explain my severe head pain, my headache for three days had been at 10/10, to the point where I had considered seeing a doctor as it was so unusual.  Maybe it was just barometric pressure?  We got back into our cars after dinner and headed back to Harmony, it was about a twenty minute drive and had already started spitting with rain.  In Harmony it was dry though and we got out of the car to have a quick look around the new house, it was lovely.  Then the next door neighbour mentioned she had a key and would we like to “sneak a peak” of course.  So we went inside, all of a sudden it was like something from the Twister ride at Universal Studios.  The sky went dark and the wind whipped up, the rain came down and we were stuck in this house for twenty minutes.  Thunder and lightening, crashed and banged around us and I was just looking at my watch thinking of the time ticking away.

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Finally it eased enough for us to run for it to the cars and as I jumped in I realised, Andrew had left his window open!  Our car was  soaked.  Our friend had beach towels thank goodness and as we drove to her house I tried to salvage the rental car.  We sat outside her home mopping up half of the Florida rain storm that was soaked into the mats and seats of our rental Jeep.  Andrew emptied the car of our boxes and his fishing rods and then it was time to get me and my change of clothes inside, it had started raining again!  An umbrella was found and I made my way into the apartment.

A quick change and we were soon back on the road, after checking the Orlando Airport website.  Our flight already looked delayed but we had no idea what we were meant to do.  So if we got there in time for our original flight then we couldn’t have any issues.

By the time we got to the terminal we could tell things weren’t right.  We went to the counter explained we had checked in and needed to drop bags, they passed us to an automated machine but were soon being looked after by an agent.  The issue our flight from Orlando to New York was delayed by a few hours meaning we weren’t going to arrive into JFK until after our connection had left.  So they started to work out how to get us back to the UK.  First was Atlanta, no seats.  Second was Detroit, seats but it was closing, so they sent our bags and escorted us through.  Now this is where it all went a bit awry.  Andrew and the security man got through easily.  I had the female TSA officer who felt that I needed to be touched in every place imaginable, and I mean EVERY.  Like I was a threat to their national security in my wheelchair!  After five minutes she had barely finished touching me up, and that is what it felt like, then she needed to swab my boots and my wheelchair.  Andrew was shouting that we had less than five minutes to get to the gate.  I knew that, the stress wasn’t helping but I couldn’t make her rush.  After three swabs, she gave me the all clear.  I belted out of that area and towards the shuttle we got on the train and Pierre our chaperone told us where we were heading.  It was a case of get there just to get a foot on the plane.  The shuttle doors opened and if anyone could get in my way they did, I had to stop and start far too often, as I built up the momentum to get speed to Gate 78, I heard them shout at me to stop, the gate was closed we had missed it!  We were 90 seconds away from the gate, I was devastated, my pain level went up, my HR went up, I burst into tears.

Delta took us to the International rebooking area, Andrew lost the plot for a bit and stormed off and I had a moment.  I  needed to take the last of my meds.  The bad news was with these delays, I had nothing for the next day, no medication and because I had checked in my luggage I hadn’t taken additional pain medication out either.  This was a disaster.  Denise and Erick of the rebooking service then started to work their magic they tried to see how to get us to the UK before 6pm on Tuesday evening.

They booked us onto the Virgin flight to Gatwick, then found out it was oversold.  Two people failed to check in to Upper Class, then they finally did turn up, so that glimmer of hope vanished as quickly as it appeared.  Our luggage was already winging its way to Detroit so there was nothing we could do about that!  Delta offered us to stay in Orlando overnight or fly to JFK and have a hotel up there overnight and get a connection first thing in the morning but it wouldn’t get us in until 8pm.  We resigned ourselves to the fact that all our plans for the Tuesday had fallen to pieces, so we accepted the JFK route with hotel.

We headed to the gate and sat there, our seats had been allocated in row 21, quite a way back, again not easy for me in my chair/using crutches.  The lovely desk agent came over and gently asked me if I was flying to New York, I said yes, she asked to see my boarding pass and took them away.  She came back with new ones, another free upgrade to Economy Comfort !  What a lovely lady, she said anything to make it a little easier for me, I said we had experienced the evening from hell, so thank you for her kindness.

The flight to JFK was quick and easy and when we got there wow it was worse than Orlando, so bad they had kept shops open in the terminal overnight because of delayed passengers.  We had a lady to assist me with my wheelchair, she was amazing.  We explained that we needed to find someone to book us a hotel as we had been pre-authorised by Orlando.  She went to this area and the line was huge, so she found an agent who was tucked away and got him to help us.  However his initial comment was we don’t provided hotels for storm delays and when he looked at our booking there was no preauthorisation for the hotel from Orlando.  I was ready to cry again and I thought Andrew was going to kill.

After a lot of to-ing and fro-ing suddenly we were being put in a limo and sent to a hotel.  I think they could tell we were ready to break.  The hotel was just as busy as the airport dishing out rooms to a long line of people and even as we went to bed at 1am, we knew we had to be back at the airport by 6:30am.

The hotel provided a free breakfast and shuttle, as we went outside to get the bus, boy it was cold.  Cold enough for snow!  We quickly got into the terminal and couldn’t work out do we go to Delta or Virgin?  We opted for Virgin, right decision, they found us on the morning flight to London and soon allocated us bulkhead seats to ensure I was as comfortable as possible.  They asked about us checking luggage, I had to laugh and explained that it was in Detroit.  She took the tag numbers and attached them to our records in case there were any issues.  We were coming home !!  We headed through security, this time they were so much nicer, yes they still needed to check me out, but it wasn’t so “intimate” and such and horrible experience.

We got to the gate and after a couple of hurried text messages to family explaining flight numbers and arrivals times, it was time to board.  The ground crew at JFK insisted on using the on board wheelchair to get me to my seat, so I didn’t walk on the plane.  We had another amazing flight with Virgin, the staff were beyond excellent, they really cared, about me, my pain level and my general wellbeing.

Having no meds for a day really did me no good at all, I had one fainting episode on the flight, when I got up to use the toilet.  Thankfully Andrew was helping me, but if he hadn’t have been there I would have been down!  He caught me, kept me up, controlled my breathing and bought me back.  All very scary at 36,000 feet.

So at 7:30pm last night, 9 hours later than scheduled we landed in the UK.  When we got to the Delta desk however our luggage didn’t make it.  That was having its own adventure.  It went from Orlando to Detroit to Atlanta to London.  Fingers crossed I might get to see it soon.

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Throughout this Delta did their very best (maybe with a couple of hic-cups trying not to provide a hotel at JFK would have been the final straw) but it was nature and there was no point shouting at their agents for a bit of weather.  They couldn’t help it.  They did their best, they tried their hardest.  So to the teams in Orlando, New York and Heathrow, thank you for looking after us, we appreciate it x

Sick, Tired and Over Here

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It’s funny the image a picture can conjure up and I love this picture it shows how happy being here with Andrew really makes me, what it doesn’t show is the health struggles that the last two weeks have delivered. Even as I sit here typing this it makes me sad enough to cry, why? because this is the only private time I get where I can get my emotions out.

Since the day we’ve arrived it’s been all about coping, trying to make the most of these two weeks and we really have. We have done so little, we have lazed by the pool as that was our plan, on the odd occasion we have nipped out to the shops or in yesterday’s case to a Nature Trail but generally this has been a feet up break, after Singapore we needed the rest.

We had our owners update and we discussed my health issues and why we hadn’t been to stay in March, the words inspirational and how dedicated to me Andrew was, it has all become too much. The fake outward smiles for everyone else whilst the internal agony is ongoing is grinding me down, yes even while the sun is shining!!

I laid on a sun lounger awkwardly the other day and hurt my sacroiliac joint, poor Andrew was there trying to move the lounger then my hips to make sure he didn’t make me yelp in pain. Eating every day is a chore, so much so that my digestive system decided to shut down four days ago, thank goodness for medication, shame it tastes so vile!! I haven’t slept a full night since I’ve been here, a combination of pain and insomnia. My left shoulder still hurts from before I left the UK and is made worse by using my wheelchair, sadly I haven’t even made it out of the chair. Dizziness, the severest headache and chest pains were the order of the day yesterday.

I try to keep smiling all day every day for Andrew this is his holiday as much as mine, I won’t spoil it for him, but he knows when things just aren’t right.

There is no point going to the ER we know what is wrong with me, I have PoTs or Dysautonomia, as they call it over here. They might manage it slightly better and I probably wouldn’t need to explain myself to every doctor and nurse!! I just can’t see the point of going and cluttering up a hospital bed, for what, to manage a chronic illness? Not worth it …. That’s how I feel, not worth it.

So this is a slightly feel sorry for myself post, I’m not feeling well, I’m tired, in fact exhausted and I don’t know how to fix it 😢

But I can’t moan look at that woman in the picture she looks so well? Doesn’t she?