*Please Find Part 2 of this post ‘HERE’
It has been a long while, so sorry about that, so much has happened and I needed time to recover and get myself straight again before I decided to update.
Harolds Cross happened, and it was great!… while it lasted! Of course, we all know, nothing goes straight forward for me so yeah, there’s a bit of a story to go with it!
The day before I went up, I got my hair cut… It was A DISASTER! No, seriously, Look…
Then on March 15th I also got another new diagnosis (Neurogenic Bladder Dysfunction!)…yeay!
Lets just get straight into it shall we?
I’ll start with Harold’s Cross.
I got called up there for 2 weeks at the start of February, not really knowing what to expect, I had asked for other peoples experiences of the place in some of the Facebook support groups and I got very mixed reactions. Some people loved the place and couldn’t praise it high enough, yet at the same time, there were just as many negative replies from people who didn’t find it any good for them, at all.
I made up my mind that everyone is different and I wouldn’t know how I feel about the place until I gave it a good go myself!
Up I went on the Monday morning. It was freezing hard and we had to be on the road leaving Limerick very early in order to arrive up in Dublin for 9am. We met no less than three car accidents on the way out of Limerick because of the state of the roads but thankfully it eased off passed Tipperary and then we were well on our way.
Of course, I got us lost on the way through Dublin and that was with a SatNav, I know, it takes talent to get lost using one of those but there ya go!! We did finally arrive and in I went.
Harolds Cross is very large, with lots of different areas to cater for different medical needs, everything from inpatient palliative end of life care to week stays and day cases for varying degrees of physical disability and the individual treatments involved.
I was immediately struck by how clean and bright the place was and how very friendly the staff were. As soon as anyone saw the chair I was asked if I needed help with anything.
Once I was all signed in, I was escorted upstairs to my ward for the week, The ‘Sacred Heart’ ward and I was assigned to bed 13 under the consultant Prof. V.
As soon as I was in the ward I was delighted to see it was spacious and open with two separate units, the first had three beds with men in them, then through an opening in the centre of the ward you come through to a bigger area of six beds, all women and this is where I was. The ladies all introduced themselves and everyone was so friendly, I was made feel very welcome and even more delighted to know there were another two EDS patients in the unit with me! One on my ward and another in the ward upstairs.
I was assigned a wonderfully kind young nurse with an English accent and she sat down for ages with me taking all my details and full medical history, telling me everything that I will experience going forward, what will happen, what is available and where to find everything. Everything sounded great so far.
I was to meet with the consultant first, he would come to see me on the wednesday of each week. Then the Doctor and nurses would look after my needs in between. the pharmacist would review my meds, and make sure everything was up to date and OK to see if anything needed to be added or taken away etc. I would be assigned an EDS aware physiotherapist to work with my individual needs on a daily basis and an occupational therapist to cover everything else like home needs, medical aids and equipment, pain management etc. other services included Podiatry, a specialist foot care clinic that could fit you for orthotics, a social worker who gave advice on social welfare, back to work or college needs as well as a stand in as a bit of a psychologist if you needed to vent! There were relaxation classes and specialist talks on various weeks covering things like pain management and the like.
I was utterly delighted to find out that they had Therapy Dogs that come and visit the centre regularly and I was lucky enough to get to meet ‘Rian’ one day on the first week, a beautiful, great big, gentle, golden retriever that I spent time giving rubs and loves to! 🙂
On the ward then, as well as handing out and sorting your medication, food (which was mostly fresh or freshly made that morning as well as doing what they could to cater for special diets and allergies!) and some other needs, you could also request hot or cold packs if you needed to sooth sore, achy joints and muscles. I thought that was a lovely touch to be honest and I wish it was available in all hospitals. Hot packs, for me anyway, bring another level of comfort that cant be touched by conventional medicine.
They have a hydrotherapy pool also so this should have been part of my treatment while I was up there, however, they were in the middle of renovations and unfortunately a couple of weeks prior to my going up, one of the building machines ended up bursting a water pipe and put the pool out of use for the time I was there. This was a huge pity as I feel the water would have helped hugely in the exercise and also in helping the muscles to relax and recover while there, but it was not to be this time anyway!
The first day was all about settling in and finding my feet around the place, after the traveling up and all the new sights to take in, I was tired and ready to rest. The very next morning I met the consultant.
He was friendly, had clearly read through my file and extensive medical history and went through all that with me. He was clued in about EDS, but just generally I found. Anything he said to me, wasn’t new, it didn’t blow me out of the water by any means but he knew what needed to be done to help, he was reasonable and didn’t pretend to know more than what he did, which I appreciate in any doctor.
With his advice my treatment was about to begin properly, the doctor and pharmacist went through my medications and it was determined that, because of the issues in my gut and the fast weight loss I experienced, I was more than likely not eating enough calories most days, and on the days I was eating enough, I seemed to be not retaining the nutrients and calories and as such, continue to lose weight and energy. They tried me on a few different types of nutrient drinks to help me along and wow… they all tasted rancid! I cant have lactose or wheat so I could only chose from a handful of watery, metallic tasting ickiness!!
However, I was there for treatment, and I was going to give it a good go so I drank them but as I was particularly nauseous that week, a lot of what I ate and drink didn’t stay down.
The next big chunk of treatment, probably the biggest was physiotherapy. My assigned lady, lets call her, ‘A’, she was a gem! She really took her time during our first assessment together where she examined my body, all the problem areas and even finding problem areas that I didn’t even know were problem areas!!
I found her to be very good, very clued in about EDS and was extremely careful not to push the areas that caused most trouble. She understood that ‘feeling’ the muscles and joints being used was ok, but there should be no pain. She was all about increasing mobility out of the wheelchair but she never dismissed the chair and it was always there for when I needed it as of course I would need it continuously going forward. She understood that EDS isn’t curable but that exercise would help better define the weak muscles and as such they would help keep the joints tighter and better hold them in place, preventing further subluxes and dislocations. Other than that, bringing up my general fitness was another priority that would only benefit me going forward.
Once the assessment was all done, she had a printed, individualised exercise program ready for me to follow on a daily basis which included a simple warm up on a bike, starting at 2 to 3 mins with no resistance, if I could even reach that, hopefully as I continue the week, ill be able to increase that time by tiny amounts. From there I had floor exercises to follow that concentrated on my lower body problem joint and muscle areas. After these I had some standing exercises to concentrate on problem upper areas of my body, followed finally by some work on the parallel bars to help practice walking short distances, resistance band exercises and finished with a cool down, simple stretches to some areas and lastly relaxation on a physio bed with heat packs.
Though I had been very ill the first week with vomiting, it had still gone amazingly well. I arrived on the tuesday and found everything to be excellently run at the center. The staff, the food, the facilities everything had been really good and before I knew it it was friday evening and time to be coming home again for the weekend rest before going back up the following Monday morning. This was both a welcome and a tormenting touch to the whole stay.
Getting up and down from Dublin to Limerick was not easy, there were early starts, long journeys in the car which are tough with chronic illness at the best of times and no sooner you get settled back home for the weekend, you are getting ready to drag everything back up to Dublin again. Going by train wasn’t really an option, even with free travel, traveling with chronic illness is unfriendly to other passengers when I need to vomit after 20mins of vibration! Getting from the train station to Harolds cross with bag and baggage wasn’t really feasible either, needing to travel with a wheelchair and carrying crutches, other medical aids and a ton of medication wouldn’t have been easy, so driving straight there and back in our own car, at our own leisure was a more comfortable option for us.
I also found seeing my hubby so briefly for the weekend was a lovely treat in the middle of my treatment but saying goodbye again can be horribly tough. I understand not everyone who is sick has a partner or ‘better half’, but I think this goes for any family members you may come home to including parents, siblings, close friends, carers etc. Seeing anyone you care about for such a short time and then saying goodbye to them again is never easy, no matter who you are!
I know Dublin is only ‘Up the road’ by some peoples standards but it’s still a good 3 hours travel time to and from the place and that takes a massive chunk out of your day. It doesn’t make the 2 hours visiting hours seem worth it when traveling up takes so long around it!
It also costs a lot on petrol so we decided to drive up and back but to leave visiting during the week as it wouldn’t be worth coming all the way up when the visiting hours are so short. Thankfully Skype made this a whole lot easier and I spent a lot of time on video chat home to himself and the pup!
As I had been very sick during the first week in Harolds Cross, vomiting almost daily down on top of the increased activity it turned out I had lost over 2 kilos after just 4 days. By the time I got home during the weekend I was in excellent spirits and couldn’t wait to get back up but I was very low on energy and spent most of the weekend sleeping to catch up on my energy reserves for the next week. This had my husband slightly worried and he wondered if I should return back up at all. I decided to give it a go anyway. I wasn’t going to be given this chance lightly again so I really wanted to give it my best shot.
Back up bright and early on Monday, I was launched into everything again straight away, Physio, OT appointments, I was to meet with the pharmacist this week too as well as the foot care clinic to get fitted for Orthotics for my very flat feet, a busy week planned, I was excited for it, but I was so very tired…
I got through Monday, but the pain and nausea started to get very bad by bed time. I had been vomiting on and off throughout the day, found it very hard to eat, even to stomach taking a drink of water. The back of my lower head and upper neck were beginning to sear with pain, I had very little sleep, was extremely uncomfortable and by Tuesday morning I started getting visual auras.
The staff were excellent. I informed them of the symptoms and they kept a close eye on me throughout my stay while I was unwell but especially this day. They kept track of my hydration and food levels, taking note of what volume I had gotten sick etc. My head was terribly heavy and my stomach was very sick. All I could do for a lot of the morning and afternoon was try and sleep.
By 2pm, I felt one of the nurses touch my shoulder and gently wake me to say,
“Lette you’re due down in physio, ‘A’ wants to know if you are going to go down or leave it today? It’s entirely up to you, take a few minutes to wake up and see what you want to do.”
I had been asleep for over an hour at this stage and had been resting all morning. I woke feeling tired but not as sick as I had been so I decided I would go down and try to do a small bit at least.
When I arrived at the physio room, ‘A’ greeted me and I told her I had been feeling very unwell. She understood and told me to take my own time, not to push myself too much and if I needed to stop at any stage to just do so.
I started my warm up on the bike and though I had managed to increase my warm up the previous week to nearly 6 mins, today I could only manage 3 minutes and it felt like the longest 3 mins of my life. Once this was done I had my floor exercises to do so grabbed my crutches and slowly hobbled my way over to the matted area with my printed program in my hand. Got down onto the mat to start my leg exercises and started to feel very strange. I slowly finished what needed to be done and I sat up to try and gather my head. ‘A’ came over and I told her I started to feel very odd. She got a chair for me and brought it over next to me. I tried to get up onto the chair and did so with massive difficulty. I felt like I was moving through treacle and my vision was begining to go black. I told her I couldnt see properly and she helped me into the chair, told me to take a quick breather and that she would be right back.
At this stage I actually couldn’t see properly at all, everything was going in and out of oily blackness alternating with swimming milky white blobs. I felt pressure build in the back of my head and push forward through my sinuses and out my ears.
I leaned forward resting my elbows on my knees, feeling a trickle of sweat tickle as it ran down my forehead, over the bridge of my nose and felt it drip off the end. Everything happened in slow motion.
The sound stopped all around me, everything now pitch black, the pressure in my head was immense, burning nausea rising in my throat which felt like it was now closing up, breathing hard, heartbeat flying…
the last thing I remember was falling forward…