Sean's Birthday - The Shard, Inamo Restaurant

It was really hard to choose what to do for Sean's birthday. It was going to be difficult to do anything that would match up to the one he'd planned for me. But I did my best and got researching online. As I mentioned we LOVE food, so I started looking at weird and whacky options for places to eat. I also wanted to arrange a bit of a surprise gathering of his friends in a restaurant (turned it it couldnt be a surprise in the end but we kept the location a secret). After what seemed like a painstaking few days streaming through restaurant after restaurant I came across a Japanese place up in the city that looked pretty cool. Its called INAMO, and is an 'interactive restaurant'. You basically have a computer screen image projected onto your dinner plate and you can choose your food on there, order drinks and ring a bell for service. You can even play battleships and ring a taxi if you want. The concept was awesome but they failed to execute it really. The service was shocking (despite the bell!) and everything just seemed really slow. It was great for the novelty and I'm glad we all did it but probably would go again. Sean seemed to like it and I think his friends did too.

Sean and friends in Inamo

cocktails

Tempura vegetables - yum

Sean and I in Inamo

I also took Sean to the Shard for a tour. Its pretty spectacular views up there and we had a beautifully sunny day so that made it even better. We had a photo taken at the top which we bought to put up at home.

Panoramics from the Shard

East Surrey Admission, Scones, and Pseudomonas

East Surrey Admissions

My admission to East Surrey came as a bit of a blow. I'd been really well for a few months and it came out of the blue. I hadn't had a cold or chest infection.. so I wasn't really sure what was going on. Our visit to A&E was much more sedate thankfully. With a bit of encouragement from Sean I went before it got too bad (I always put it off in the vein hope I'll miraculously recover), and am glad to say that it was a sensible thing to do. It meant I turned up conscious anyway ha ha. Believe it or not that's not always the case. I avoided having a piece of metal drilled into my shin this time - which is always a bit of a Brucey bonus. Thankfully they did the logical thing and whacked a central line in (not before butchering my arms with a dozen or so needles). Which I have to say was a godsend. I spent a few days on a clinical decision ward, where I seemingly was completely forgotten about. And it wasn't until Sean nagged them relentlessly that they actually realized and saw that I'd slipped through the net. That same afternoon I was moved to the chest ward - funny that!
I was there for a good few days, nothing had really changed, I was no worse but no better. But not being able to even get to the bathroom on your own for lack of the ability to breathe does become somewhat of a pain in the A after a while. Anywho it all came to a head in an almighty crash I had. They took their sweet time to get a doctor to me when I was telling them, so the inevitable happened and it became a drama when they couldn't get my breathing under control. Unfortunately this happened in the small hours of the morning. They called my parents and Sean to brief them on the situation - at which point I was blissfully unconscious and in respiratory arrest. Sean was told to come as soon as possible as I was basically half dead. Bless him when he arrived he just saw a load of nurses and doctors stood by the desk with their heads down looking very solemn, he said his heart literally sank and he thought he hadn't made it in time. I'm glad to say and as you can see - I did survive, its just they had had to intervene with intensive care doctors and ventilation. As always I'm very glad not to have remembered the event itself and am just relieved that this is becoming a less common occurrence for me. Though (without being morbid) I cant help wondering just how many more of these respiratory events and interventions my body can take? I think I've more than tripled the standard 9 lives of a cat already. It turned out I was growing pseudomonas, which hadn't been detected and so I wasn't on the necessary treatments for it. Anyway, after another week or so I managed to talk my way to getting a discharge home... and now it all seems but a distant memory :)  

I got kinda down during that admission. Sean and my parents were a massive support. But I felt kind of abandoned by everyone else. My friend Emma worked all day, then drove a goof 60 miles in the evening to see me. That really perked me up. She's always a star, and she brought scones and clotted cream - winning!! 

ouch!

Emma and Scones

My 28th Birthday and a list

This is my first blog of 2013, I can't believe its almost 7 months since I last posted!! So much to tell. Not sure I'll fit it into one blog though, that might become a bit of a laborious read.. I wouldn't be cruel enough to do that, not today anyway :)
So first things first.... erm... I should probably put a 'little' list of things I should have blogged about but haven't had the time to .. in small bite size chunks, just to keep you in the loop .. (bare with me, I'm working through my diary to jog my memory)

• Acupuncture : My  pain consultant offered me acupuncture as a form of pain relief, once a week. I've been having sessions now for about 6 months. It's been great, made a massive difference to me and has really helped me sleep. Effects arent as long lasting as hoped though. Back to the drawing board.
• Ralph's 6th Birthday - my boy is middle aged!
• Korean Restaurant - Went out with a bunch of friends to a Korean restaurant in New Malden. Was certainly an experience. Was awesome seeing the food being cooked at your table. I had my first taste of Kimchi, not sure I'll be eating it again - Though the fried egg in the middle was nice 
• My 28th Birthday - will actually write something properly on this because it was pretty cool.. keep reading and I'll update in a bit.
• East Surrey Admission - A two weeker, including a stay in ITU - nothing out of the ordinary for me but pretty unpleasant as you'd expect. 
• Barcelona Hen Weekend
• Sean's 28th Birthday 
• Endoscopy - definitely need to expand on what happened with that!!
• Ralph at the vets - wow - that got expensive!
• Great Aunts 90th birthday bash - Liverpool
• Croatia holidays
• Afternoon Tea in London with Tor
• Quilting lessons
• Hearing Tests

So I'll start with ...

My 28th Birthday..

It was my first birthday spent with Sean, and he spoilt me rotten. I was woken up by being covered in birthday balloons and to the sound of birthday banners being hung. I didn't feel  melancholic about this years birthday. I think I previously mentioned in a blog that on my 27th I suddenly had this realization that I was the wrong end of 20 and felt like I hadn't really achieved a lot. But this birthday wasn't really like that, I felt old for sure but felt a lot more positive about things. And having Sean there made things even better. He bought me a really beautiful necklace with matching earrings - I don't think I've taken it off since.We also went to Jamie Oliver's restaurant 'Fifteen' (you may remember it from when he did his first show with all the disadvantaged adolescents he took on to given them a skill). Well he's still doing the project even though we don't hear much about it these days. Food was pretty awesome. 

Then a couple of days later we went to a cooking lesson in the Jamie Oliver cookery school (Are you noticing a trend here). Sean and I are massive foodies - you may have noticed from our ever expanding waistlines. We learnt how to do some vegetarian curries and special Indian breads. It was yummy, but when the tutor tells you not to add too much chilli, she says it for a reason! - remember that. I thought my head was going to explode. 

At Jamie's Cooking class

We did it!

New Years Joy

Hi all

 

Well here we are on the eve of 2013. I'm sure many of you will be expecting me to write a miserable rant about how crappy 2012 has been and show little hope that things will ever improve (as in previous such blogs). I may just surprise you for a change...

 

2012 has truly been the positive year for me. For so many years previously, things have been what I deemed 'unbearably bad'. I struggled terribly with poor health, which saw me spend more time in a hospital bed than in my own. As such I went on to suffer severe depression that seemed to have no let up. Many a day was spent laying in bed unable to think, unable to process even the most basic of tasks. Everything seemed unachievable. I had managed  (I don't know how) to lose the ability to even think about tomorrow, let alone be optimistic about it. As such all my mind was filled with were ways that I could end the misery I was living. After enduring this for a good 8 years, I never invisaged a day when things wouldn't be like this. A  day when I wouldn't just spend every second 'surviving', instead of 'living'. And all the while I did maintain one thing, the ability to pretend everything was 'ok' to my friends and extended family. My nearest and dearest of course knew what I was going through but no one else did. I would literally say goodnight to people, close the door bearing my perfected faux smile and break down. I would cry and whail uncontrollably all night. Always imaginging how much easier it would be if I were just to cease to exist. The reason I am telling you all this, is not because I wish to harp on about how naff my life 'is' and what I am 'enduring' but quite the contrary. I'm telling you all this to show you how naff my life 'was' and how much I 'endured' but no longer 'endure'.

 

This year, quite out of the blue my life changed. I don't have great health, I am still very much the same health wise. Infact my joints are so ravaged now I can barely walk the length of my street. And despite this, despite a lot of things that have worsened from a health perspective.... I am inexplicably happy. That's right, you heard me, Gemma say that I am 'inexplicably happy'. Life appears to have thrown me not one but many trump cards. I have so much to be hopeful for.

 

Not least, this year I have met my boyfriend. It sounds like the most basic of things to expect from a partner... but Sean has genuinely been a major driving force behind me developing my self esteem. a few years ago I felt like I had something to offer the world. I felt bright and intuitive. I felt good at my job, and felt like I was really making a difference. All that was lost when I had to give up work. After a long period of feeling surplus to requirement and with no real place in society, Sean has shown me that I still have it in me. He has been the initiative behind starting Lamtons Ltd and has given me a lot of responsibility. Never questioning whether I should 'do it this way', or 'let him check first'. He just tells me to get on with it and encourages me to trust my own decisions. To most of you, just 'getting on with it' probably sounds like no great achievement. But for me to trust myself, to know that I have a crucial role in this has been life changing. I wake up every day now and know I am needed. I know there is a reason to get out of bed. 

 

And I can't forget to mention another big reason that this year has been great... I got to fulful the number one thing on my Bucket list, going to an Olympics!! There are no words to describe how happy it made me to fulfull this dream. I wrote a blog about it at the time so wont re-live it all for you but it was simply magnificient :)

 

We have just spent our first Christmas together and it's been great. I've never woken up anywhere on Christmas morning that isn't my parents house. It was a really strange for me. But we got to see Sean's mum that morning and then went onto my parents for lunch and the afternoon. It was a great day and the house hopping continued until after boxing day. We went to see Sean's sisters and their partners and kids. Kids definately make Christmas. Loved seeing them rip open their presents and the excitement on their faces.

 

 

 

My brother and his wife were back from Cambodia and so we were all really excited to have them home. His wife Vanna is here for her first UK winter. I think it was a shock to the system after coming from a country that rarely sees tempertaures drop below 30 degrees C and when it does they all get the woolies out. But she seems to be loving seeing all the lights and trees etc. She tasted her first parsnip and first brussel sprout at the table for Christmas dinner. Sprouts were a miss, parsnips were a hit. We also went to winter wonderland yesterday with her and I dont know how she felt about it all but it was a bit of an assault on the senses from my perspective. So loud, so crowded. It was insaine. I dont think I'd go back.

 

 

 

This year is mission 'save every penny'. We hope to be in our own home by next Christmas. It means being boring sods all year and not going out much, or buying any more Costa Coffee (booo!) but it'll be worth it if we can be in our own place. Just can't wait to be somewhere that we can call home, and decorate it exactly as we please. Theres only so many magnolia walls one person can take (my flat) before you go stir crazy.

 

So we are both very excited for the coming year. We have a great deal to look forward to, more than I can write down in this blog. And as such a great deal to be thankful for. I am finally seeing life for the rich tapestry that it is. No more tears, no more time spent wishing my life away. It's time to start living. Happy and Healthy new year to you all xx

 

 

Holidays, MRI's, Neuro and Christmas :)

Hi All 

Its been a long while since I've blogged. Have been kind of busy with a few different things and I guess it slipped my mind. I noticed someone else was blogging and posted the link on facebook so it reminded me I really should crack on with some writing. 

Loads of stuff has gone on. Most of it positive I must say - which is never a bad thing! I'm sitting here trying to wind back the memory to tell you about it all but I'm not having much luck - my memory sucks.

I went away with Sean and his family to Spain for a week in September which was fun. We had really naff weather but we had a laugh anyway. It was great to get to know everyone a bit better. Following that Sean has mostly been away with work in Belgium. So we haven't had the opportunity to do much the past few weeks.

At the harbour in Puerto Buenos, Spain

We have managed to launch a new online business which sells baking equipment and tools for cake decoration. The sales took a few days to start rolling in, but then before we knew it things were really picking up. At the moment there is a bit of a dip but we are slowly finding our way out again, it's all a bit of a price war. The business sells on Amazon so you really have to keep your head in the game to see what your competitors are doing. I am learning a lot I must say. 

As far as health is concerned, I have been relatively stable with my chest for the past 3 months. I am so grateful for the break from hospital admissions and IVs. I still have days where things are really difficult and I'm struggling to even get out of bed but thankfully at the moment that isn't every single day.

Since the drama at the neuro-physio appointment that put me in hospital, I haven't been able to do much physio. This is because the physio isn't keen to get to hands on for fear of causing too much damage since we were still awaiting the results of my MRI. Thankfully they are now back and go someway to explaining the problems I'm having. I have 5 bulging discs in my thoracic spine, a couple more in the lumbar region and my bones are osteoporotic (thin) in the thoracic area particularly. I am obviously pretty upset that there is so much wrong and its going to take a lot or physio and potentially a neurosurgical review to sort out. At the same time though it's a relief to know that there is now a clear cause for my ongoing pain and I'm not such a mystery any more. It's also nice to be able to tell anyone who doubted me that there is a true cause for this. And I'm not some sort of drama queen. A specialist pain management team are going to see me since the review of my MRI so I will be glad if they can offer me some relief. I was told the pain team can offer acupuncture which I would be keen to try as I don't want to be reliant on strong pain meds.

I've also been discharged from neurology in terms of my seizures as he and his colleagues confirmed that the reason for my seizures was associated with gas exchange in the blood (caused by my asthma and the damage it has done to my airways over the years). I am so glad to able to get rid of one specialist at least. I want the most minimal intervention, I don't want too many people getting involved in my care as it just complicates matters. In the past my teams have been keen to get new people involved  for new opinions all the time but they seem to take the same stance as me these days and just keep it to a minimum for my sake. It's a case of too many cooks spoil the broth I'm afraid. One of each speciality is quite enough! The neurologist has contacted my Brompton team so they will put plans in place to sort this gas exchange issue out if they feel its necessary.

As far as my local respiratory team are concerned, I've decided against going back to them as well. The doctor although very nice was not doing a lot. He promised many things, over the years - with the best intentions but he never came through with the goods. I have changed to a different team who I met on an admission a few months back and were very proactive. They arranged my portable oxygen (I had waited for my other respiratory doctor to fill in the paper work for 3 years) within a matter of minutes. This has been a real godsend as far as travelling any distance is concerned. It's small enough that we can just chuck it in the boot in case of an emergency and they have conservers on so a tiny bottle can last about 8 hours. So fingers crossed there wont be any more dramas where we are in the middle of nowhere and miles from any hospital with no oxygen. 

Other than all that, I am in full swing for Christmas and have done a lot of my shopping online this year which makes things a lot easier. I hate aimlessly wandering around shops for hours trying to find something someone might like. Nope! This year I came with a plan. And am pleased to say I have most of my shopping done now.

Will try and write sooner next time..  adios!

PS. Saw this and thought I'd share with my other friends who struggle with health complications.. 

Very true

An unexpected drama at the Neuro physio appointment

Since the Olympics ended things have gone downhill. I'm really glad things didn't go wrong until after the games, I'd have been really upset to have missed any of the action.

As I have talked about in my previous blogs, I walk with crutches as I have hip and back problems. I suffer from chronic pain in both but last week my back pain became much worse. It seemed to gradually increase over about 3 days. I was up all night walking around and was really fidgety as I was trying to get it to a level where the pain was manageable. I had neuro-physio coming up on the Tuesday and that day couldn't come quick enough in my mind because my physio has a knack of reducing my pain by using pressure points to release muscle spasm. Unfortunately when I arrived I was in absolute agony and no matter what she tried it just didn't seem to help at all. In fact, I think it made it worse. I could feel my eyes watering and at one point I was silently crying because I really didn't want her to see me being such an idiot about it all. When she finally finished, she asked me to sit up, which didn't come easily. Unfortunately as I sat up, I projectile vomited everywhere. Thankfully she managed to move out of the way just in time and spared herself. After that I just sat there swaying with my eyes closed feeling really faint. I must have looked like a right numpty!! I told her I needed to lay down as I felt so bad. She called the doctor over from the other wing to take a look and they checked everything. I had really low blood pressure and my oxygen levels weren't great. I think the stress of the pain was causing all this. Any who at some point during all this I did actually pass out, and woke up to find an ambulance crew stood next to me. I really didn't want to go in  but they weren't giving me any option, and with that much pain it didn't look like I had a choice, it wasn't like I could walk out of there. They took me to one of the local hospitals.

I was seen really quickly at the hospital and given some painkillers to try and ease the pain before they examined me. I never understand why they always try and give paracetamol  (the weakest painkiller in a pharmacy), to a patient in severe pain!?! As was expected, paracetamol did sweet F A, so they gave me some oramorph aswell. This didn't help either, as I use this at home intermittently for the pain and I have a certain tolerance to the low doses which means I don't really get a lot of relief from it. Eventually he offered me some IV morphine but as  good as this is as a painkiller, I knew he would never get an IV in me. I always go through the same battle with them time and time again. But I did have to eat my words when he got one in first time, albeit in my little finger! I couldn't knock the fella, he did a good job there. Perhaps my veins have had a chance to heal during the period I've been well.

The doctors at the hospital were concerned about a fracture of one of my thoracic vertebrae. Mainly because I have some degree of weakening in the bones due to steroid dependency for the last 15 years (for my lungs). I had a thoracic x ray and it was clear of a fracture but the x ray managed to incorporate the first 3 lumbar vertebrae as well and the doctor told me he could see that there was literally no space between them, they were sitting one on top of the other. As you can imagine bone rubbing on bone can be incredibly painful. I didn't want to stay in the hospital as I had an appointment with my own doctor/GP that evening and my physiotherapist had had a long discussion with her about putting me on a new medication called Gabapentin which is a drug that directly targets nerve pain. This seemed like a good option as the analgesics I've been on until now have a wide variety of uses and so don't necessarily act on the areas where I need them to. The doctor wanted me to stay as the analgesics weren't totally relieving my pain, but I figured that I'd only be stuck in there for days on end, being given loads of opiates, only to leave for home with no better idea of what was going on than when I came in. As it was, by the time we left I was too drained and in pain to get to the GP anyway. So Sean called them and explained the situation and asked if we could pick up the aforementioned new drug prescription so that I would be able to have some relief that night. They agreed but we needed to wait to hear back from the doc that night as he wanted to talk to me. But,  low and behold..... he never called back so I was left with NO pain relief that night. I was so angry and so upset. I was in agony and this just wasn't fair.  Thankfully the next day I was able to see my own doctor who gave me a script for the garbapentin and also played around with the dosages of my other medications, adding in tramadol as well. This has really helped over the past few days and I have finally managed to get some sleep.

The physio visited my house a couple of days later to see how I was doing. I was using my oxygen a lot as the pain killers were affecting my breathing. But without them I would have been climbing the walls so it was a necessary evil really. She was a bit concerned to see me laid up in the bed, still in pain and quite knocked off by the medication. She decided not to do any physio work that day as I was still in a fragile state and she didn't want to risk aggravating the injury. She consulted with the GP and together they decided they want me to have an urgent MRI on my entire spine and have referred me to see a neuro surgeon at a clinic in Dorking. They think my symptoms match with a slipped disc which may or may not need surgery (if that's what it is found to be). This has worried me as it seems pretty serious stuff but I am glad that they have been proactive in trying to find a cause for this as throwing drugs at it and treating it conservatively (as has been a habit in the past) is really not a solution.

I'd really like to start a family at some stage and so having long term issues with my spine and hips is a big worry for me. I am worried the pressure on my spine and hips as the baby grows will be majorly problematic for me and the  baby. I don't want the pregnancy to be one where I am laid up for 6 months of it in pain. That wouldn't be good for the baby. I asked the physio about this today. I know its not a pressing issue for right now but it was just something that was nagging me and I wanted to ask her about it so as I knew what to expect in the future. She really put my mind at ease as she said both her and her sister have had this injury and they were both able to bare 3 children each. She said that they actually found their back problems improved during pregnancy (who'd have though that!?!) as the muscles around the back relaxed to accommodate the babies growth. Apparently it's a common occurrence. So thats one less thing to worry about anyway. I'm waiting to hear when my appointment for the MRI and Neuro surgeon is. I'll no doubt blog about it more when I have them - should be happening in the next two weeks. 

Living the Olympic Dream - One crossed off the Bucket List

Hi Folks

This week I am gloriously happy. I don't think in my entire life I have ever been able to say I have been 'gloriously happy'. There is usually something niggling at me. The reason for my perky mood is that I got to attend the Olympics on Monday 6th August. And not just any Olympic event, I actually got tickets for the stadium so I was in with that huge crowd. I'm sure many of you are probably sick of hearing me bleat on about it, not least if you follow me on Twitter or are a friend on Facebook. But it has been a dream of mine to go to an The Greatest Show on Earth since I first understood what it was all about around aged 12. I never actually expected it to happen. So when I got my tickets offered to me in the ballot I was speechless. I remember just weeping like a complete nutter. I'm remembering it here as I type and its making me well up now as well. I know it must seem strange to some folk that I am such a die hard fan of the Olympics. I can't put my finger on what made me start loving it so much, all I know is 'I do!'. I will watch any event and when I originally went into the ballot, I ticked every single box for every single sport for both Olympic and Paralympic sports. I wanted to see it THAT badly that I didn't care what sport I got as long as I got to go.

The excitement on the build up to it over the last year has increased exponentially the closer it has come to my big day. My brother Ben is as nuts on the event as I am and so I was really excited when he was planning to come back from Cambodia just for the games. Unfortunately, due to the ridiculously high prices that flights cost it was unachievable. I had four tickets so I invited my uncle to take my brothers place. We are a bit sport fanatical as a family. That is to say, we love watching it haha, not actually partaking. 

The day started really early, 5:15am - this makes for a very tired Gemma. But spirits were high and my boyfriend Sean was kind enough to drive us up to Stratford for the main event. The park is absolutely huge. The TV set doesn't really do it justice. There is so much to see!! I took the wheelchair for the day, I never would have managed even to get to the Olympic entrance gate without it. Everywhere is a lonnnnnng walk. I'm really glad I made the decision to do so or I would have missed a lot of the magic.

Outside the Olympic Park

Ready to go into the Stadium :)

When we got settled in our seats there was enough time to soak up the enormity of the stadium from the inside. Everyone on the opposite side in the tiers just looked like dots. On our day (Day 9) the stadium was full to capacity - 80,000 people. Even though it was the qualifying heats, it felt like a medal event. The atmosphere was absolutely electric. Whenever anyone ran past on the track or anyone threw a shot put/discus on the field, the crowd just erupted, no matter what country the athlete was from. We were lucky enough to see the 1500m qualification round for the women, 800m qualification for the men, the Women's Shot Put, Men's Discus and 200m Hurdles for the Women. So much to see, I just didn't know where to look!!

Hannah England in the 1500M Qualification - she's wearing the knee high white socks

We all came in our Olympic T shirts, waving flags all the way  and with a lot of Olympic fever!! Was great to see so many people from so many nations doing the same. I even painted my nails with Union Jacks. A day I will remember for the rest of my life, so lucky to have shared it with my loved ones too. I have some great photos and I cant wait to get some of them printed. Now the heat is on to get some Paralympic Tickets on the official website. I would love to see some Wheelchair Basketball and Cycling, though as always, any sport will do for us :)