Ok. Here is my attempt to journal about my holiday in Melbourne. I do this for a number of reasons. One, for the memories. Two, to hopefully sleep better tonight by getting all the thoughts out of my busy brain and three, so I can tell you all about it!
So here I am listening to Claire De Lune drinking tea in my room at the fabulous Victoria Hotel at 8.26pm, just had an utterly divine dinner at Alice’s Thai Restaurant (something I have not been able to do in 2.5 years!) followed by a swim in the hotel pool surrounded by glass and glittering city lights.
The day started off ok considering the night before (I had some very upsetting news) so a dash to the hospital to see a friend before coming home to try and get some sleep. I got out of bed at 8am and had a quick breakfast and hopped in the shower before my sister Natalie and nephew Xanda came down at 8.30am to pick us up. I knew that with the arrival of Xanda all my best laid plans would go out the window. So here I was doing my hair, makeup, getting dressed and finishing packing with my shadow (aka Xanda) following me. He had retrieved 2 of his little blue chairs and put them in the bathroom with me carrying them all the way up the passage so we could play trains. I of course did not have the time to play with him (something he has never encountered before in his 2.5 years hehe). So he upped his game a little with the cuteness and went into my room and got my book off my bed and came into the bathroom and said “I will read you a story”. I had my head upside down drying my hair quickly and looked over to see what he was doing and he had dragged one of his little blue chairs into the bathroom with him again (my sister had since moved the chairs out of the bathroom) and he kept going to sit on it, ready to open my book to read to me, but I would remember something in my room and duck in to get that so I would turn around and there he was dragging the chair into my room as I dashed past him back into the bathroom only to then see him coming into the door with the chair again (and the book – no idea how he managed to carry/drag both). In the end the musical chairs occurred twice more until he proclaimed “I am going to sit on the floor and read you a story”. He is such a bright boy and already knows his letters and proceeded to go through all the names in the family which began with letters he found in the paragraphs. He then says “And Corkie says: hello. And Xandy says: hello. and Corkie says: I love you. And Xandy said: I love you too”. I was half frantic/half hysterical at this point trying to get ready and knowing I was running late, still half asleep but totally and absolutely and utterly in love with my nephew so when I heard him say that I burst out laughing (nearly poking my eye out with the mascara), turned around and swooped down to gather him up in a big hug and kiss. I finally yelled out “SOMEONE ANYONE” to come help me or entertain Xanda. I finally managed to get into the car and Xanda held my hand in the back seat all the way to the airport talking about it non-stop, about Jeremy the Jet Engine and everything he could see and think of (so cute!) but by this stage I was already a mini wreck. So we got out of the car at the drop off point with a very unhappy Xanda in the back as he could not come with us nor touch Jeremy the Jet Engine. I had to turn my back on him very quickly after goodbye as I simply cannot bear to part with him. I do ok if he goes to Queensland to see his other grandparents but I feel so GUILTY leaving him behind. I know you probably thought I would at least be in Melbourne by this point in reading but Xanda is such a huge part of my everyday life that there is not a moment that I don’t include him in.
We got to check in with the board flashing boarding! We freaked out, ran all the way to the gate (I normally have a wheelchair so that’s saying something) and finally got on the plane during the final boarding call! So close! In the air we went – I was managing ok but had started to sneeze from the air conditioner so I started snuffling away at the tea tree oil! It is worth its weight in gold a hundred times over (I did not get sick the entire holiday AND no viruses or illnesses since I have been back). We are up and down before we know it (only 45 min flight) and off the plane we hopped. As we landed I was “Ok wow we are here”. I hadn’t really caught up with myself. Went to claim our one suitcase (full of my meds hehe and extra storage for the CLOTHES we buy) and because I was really starting to fade we caught a cab to our hotel. Using the skybus shuttle from the airport to the city is about $16pp and is uncomfortable not to mention full of people and all their luggage – I just couldn’t do it. The cab was not so bad – it was $50 so $25 each which is definitely worth ones health.
We checked in to our hotel – http://www.victoriahotel.com.au/ and the room was perfectly appointed (if a bit of a walk around the rabbit warren corridors hehe – I was about to sit on the suitcase so mum could wheel me). As we got into my room, I flopped on the bed, had a cup of tea and was out cold for about an hour. Mum decided to get a head start on shopping whilst I rested. After waking up feeling much more like the living I put myself back together and met mum down the road. I cannot tell you how LIBERATING that felt! Just walking from the hotel room down the street on my own ? I felt confident and very very happy pretending I was just like everyone else. Mum and I proceeded to go to Bourke Street Mall where the standard retail stores in the city are and had a nice look around. It was very busy and hectic. I was not accustomed with people darting here and there and large grouping of girls and women with perfumes deodorants and hairsprays in a confined space so it wasn’t that pleasant but I stuck it out. As I do, I start stressing when I can’t find anything to buy, especially when I forgo things at home and save for a big shopping trip but we did the Mall and then decided to go to the DFO.
We walked a couple of blocks (yes I know! What CFS?) and caught the city circle tram to where the DFO…was. It had moved! This is where I started to struggle to adjust my thought patterns. I had my first test in the Mall with people and directions etc, but this landmark had moved and wasn’t what I thought it would be so the energy I budgeted had to be changed – for good or bad I was not sure yet. We stayed on the tram for a couple of more stops and the conductor told us to cross this certain bridge and it will take us to the DFO. We did that then had about 5 traffic lights to cross in a HUGE big intersections with LOTs of traffic and cars which make me edgy but we finally made it to the DFO and I settled in a bit more (but the extra 10 minutes walk had already depleted me and cut into my energy time limit). We looked at all the shops. I was determined on that, nothing worse to leave something half done and I purchased a couple of lovely things. My feet were positively singing at this point. We stopped half way round and debated on lunch – Subway which I can’t have, makes mum sick but has it anyway, or fried Chinese food or…sushi! Now I have had it once before in London but only a very small portion and…I HAVE FALLEN IN LOVE! The ultimate CFS FOOD! Raw, light, healthy and totally filling! So one chicken and teriyaki and prawn and avocado roll later (mum and I split it) and we finished the shops.
I was really dead on my feet by this point, had used up all budgeted energy and was starting on my reserves. We got off at our tram stop and started our walk back to our hotel but called into the minimarket on the way and grabbed a few things…my beloved rice milk, Thins chips and some chocolate! The chips are gluten free and the chocolate is 70% dark which my specialist said I can have as it scavenges the free radicals in my body. Hooray! So I can have a little bit each day (and you ladies out there might know why I was manically craving some….). Spending time in there with the lighting and people, even though it was needed, depleted more of my reserves. By this point I was slurring my words, was very pale and couldn’t keep a thought straight in my head let alone walk straight hehe but it was also finishing work time for the city workers so there were masses of people. Mum and I ducked up a lane way thinking it would short cut us – my fault. I am actually part compass, seriously, but it failed me today hehe. We were 2 blocks over from our hotel and 1 too many. By this point my legs were seriously making themselves known (I have spent the last 4 months in bed) and my feet, not to mention my nervous system, and well every cell in my body. Mum is great as usual encouraging me to keep going and we managed to get to our hotel (please note along the way I was not too far gone in some part of my mind to register some shops to go back to) and we got upstairs and into the room. Again I flopped on the bed with a cup of tea and had 10 minutes rest whilst mum went for a swim and then realized that I had to pay for the net in the room! I thought it was free! But I’m glad I bought my laptop so I can write this. I called dad at home and he googled where the gluten free places were so I could mark them on my map but realized the place I had in mind for dinner was further away than I thought. The idea of moving at all almost brought me to tears so I had another little rest and decided to go up to see mum, just stepped out of the room and she was coming up the hallway. I filled her in about dinner and she said “Look there is Thai restaurant downstairs, let’s try that no matter how much it cost”. We were going to take-away as I was so tired but when the lady asked us if we wanted a table I was automatically going to say no and almost physically stepped back but then I thought yes,. YES! I can do this. It was quiet, low lighting and nice music playing and I remembered THIS is what I came here for. To learn more lessons, learn more boundaries and try new things and have a normal as possible existence. As I sat there I felt my tension headache fade away and I didn’t even have to have codeine! Afterwards mum took me up to the pool for a swim to help my dear little legs and feet and then here I am. Another reason I am glad we ate in was because mum and I got the chance to reminisce about the last time we did that together – and that was when we traveled Europe! So we had a fabulous funny time talking over delicious food I know mum didn’t have to cook after a long day at work just for me and watch her enjoy herself too.
I did think later about my condition and the way it appears – as I always tend to do. I don’t look any different (apart from a bit pale) from anyone else and I thought when I have to get out of a place or I go to go first in a line instead of letting, say, an elderly lady person first and then I get glares because I didn’t let them go first – I want to tell them my body is in the same condition as theirs, I am sick you just can’t tell. So those things go through my mind, as does when I am in shops. I feel like all my personal space is gone. I suggested to mum maybe a neck brace or an arm sling would make people step away from me or move more cautiously around me so I wouldn’t get so anxious etc. It’s something to think about. Thursday though at the larger shopping centre I will have to have a wheel chair so maybe it will be a better experience then.
I also noted how much I love where I live in Launceston, Tasmania. I blew my nose when we got back to the hotel and black soot came out from the pollution here in the bigger city. And nothing I am on medication wise will cater to any of that. It was also thought provoking and I am going to research pollution and illnesses/disabilities when I get back.
Another outstanding thing is not once did I take any of my anxiety medications! I did at one point need a codeine but normally I need about 3 to get through the day from the people and smells and noises and lighting! It’s the worst lighting. I did notice towards the end of the day my Tourette Syndrome started playing up with eye tics. I just wanted to close them and I hate that more than anything so trying to control that makes my skull and brain tense but it’s not so bad now.
Well time to sign off and start a new day waking up in a new place – Wednesday. We learned today to walk slower, eat more, more breaks, stress less, and just enjoy tomorrow. I hope the mattress is comfy hehe.
Stay tuned! I will try and post pics if the darling Mr Bercume can help me otherwise I will share a link from my facebook account.
(P.S. I wrote this bloge after a very long day and now editing it after another very long day so forgive any typos or poor grammar but I know if I don’t get started on this it wont happen lol oxoxox)