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life

I think for the first time i am starting to not feel ashamed of where my life is. Not because it has changed and got better but because I am so proud and pleased what I have. Instead of comparing myself to other people and what they have. I appreciate what I have. 

I live in annex attached to my parents house. I live with the guy I love. It my own house space, I have a puppy I love what more could I want. One day I will own my own house. I have my own business which is building successfully even with me being ill. 

There is so much to be thankful for in life you just have to see it. I could go and on and on about how unfair my life is but where would it get me. Would it help me get through the day.... No! It really wouldn’t. 

I can’t at the moment do all the things I dreamed of. I would be on a cruise ship singing if i could or in theatres singing my heart out, but I have made new dreams and put them on hold. They will never disappear but i hope I have time to achieve them and if not I always tried. 

I will never give up on life and keep happy and positive you only have one life so I chose to live it to the fullest!

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Fatigue is a toad

Since september when i got back off holiday fatigue has been kicking my butt. It is such a wierd feeling and hard to explain to somebody. It is not like being tired where you tired but can still function. When fatigue is at its worse like now i struggle to get out of bed. Moving from room to room is so hard and i feel like i am drunk when i am. I have had a nap made no difference at all. It makes it hard to do anything. So when my list of stuff is piling up for me to do, fatigue makes everything even harder and takes so much longer. 

Each day is different. I might have a hard morning and a great afternoon. All day might be good, all day might be bad, I really have no choice in the matter. I will always try adn push through it as otherwise you just do not get a life, but days like today when I can just rest I do. 

I try to make the most of the days I have energy and it is wonderful when I can achieve things that I have been working on for so long. I set small goals and big ones so that it helps me get through everything and not feel like i am wasting my life in bed. 

I am loving watching lots of films old and new. I am so am planning my christmas. I try to concentrate on things that make me happy. I may have already watched a couple of christmas films hehehe.

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Silly brain

Some times I wish I could just turn my brain off. Sometimes your mind can be your best friend and sometimes your worst. Mine wants me to do so much. I have so much inspiration for things I want to do with my singing career, which my childrens book I feel i could achieve so much if i just had a body that would let me. They really arent on the same page at all. 

This might sound fanastic you have so much inspiration but it then leaves me feeling awful because I can not do it all. I do not have the energy and I can’t push, the more I push the worse I am physically. I look at everything i have and I am thankfull, but knowing that Mark and I could have so much more. I could be earning a proper wage. We could be living in our own house, could have a child or I could of taken over the world either one. I know you can not have it all but i would just like to be able to walk my dog without collasping or singing a full gig. Just a bit of normality. 

I am going to finish with three things I am thankfully for as I feel this isnt super positive today - 1. Being Alive. Everyday I am thankful for still being here when so many people arent. 2. My amazing man and family 3. Bumbly bees and everybody to do with it. It keeps me sane and gives me some normality, Seeing the children so happy and that I am making a difference in their life makes me very happy.

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Lessons learnt this week. An Addisonian crisis can come on super quick. You cannot control alot of things in life and you just have to ride the wave. A brillant support system around you in very important and a blessing people do not have to be there for you and look around you there is inspiring people everywhere. 

So had a hospital visit last week got rushed in on tuesday afternoon after going into a crisis. It has unnerved me greatly as happened so fast and was unconscious for 40 minutes. 

i spend my time feeling guilty when life gets to much. When I am not my normal positive self. I think well there is always people worse off than me so why should I be here feeling sorry for what life is dealing me at the moment. I put so much pressure on mysel, but everybody goes through a time where things are just to much. At the moment things are coming at me from all directions, health, money, work and its just alittle to much. There I said it. All the balls i am juggling I want to throw down on the floor and not pick them up for a bit. Just sleep for a week and then I might be able to start picking them up. But as I drop one three more come at me. I think its september the month is not liking me. 

Tomorrow i am off to Papworth to have a loop fitted to record my heart beat for upto 2 years. For a normal person whatever one of those are would be striaght forward for me we will see. Nothing is striaght forward when it comes to me. I have phoned and prewarned them to make sure everything is in place incase I go into a crisis and they said one room has hydrocortisone iv in and the other doesn’t so make sure they do not change rooms. Ok I feel reassured. 

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Summer Holidays

Wow what an awesome summer holiday I have had. I still have one week left of holiday before work starts back. This week is about getting everything sorted and being fully prepared for the new term. I am also using this week to concentrate on things important to me. Me time for example working on the piano, writing music and working on building my voice back up. I also want to do some new cover videos and try do one either every week or every month. I do not want to put to much pressure on it as it all depends how i am feeling. I must remember not to push to much. I am still recovering and trying to get all my levels right. Winter is coming and that is never a good time for me. We also have a lot of stress to deal with at the moment and things we need to work through. But I love to dream of all the amazing things we can do, the world is our oyster and i cant wait to explore and just live. 

I forget to live sometimes whether thats hanging out with friends, going to new places or learning new skills. I have to remind myself there is so much more to life than just trying to earn money, stressing and being ill. You can’t let it take over you life. You have to sit back and let things you can’t control take its path and see where it takes you because might be somewhere so much better than you can imagine. 

My summer holidays have been made up of performing at some festivals, an awesome holiday and spending time with friends. Mark and I went to greece for just over two weeks. I was so scared before with how my health has been. I tried to think of everything that could go wrong and prevent it. I got myself very stressed with it. It paid off though as we had no problems. I only had to inject once and that was because I had to walk back up a mountain to get to our hotel as i had gone to the beach. I had no other way of getting back up there. I wasn’t confident to drive down there yet. Well I deffo drove the next time I was not well. My heart did not like flying but we handled that. 

Relaxation is such an important part in somebodies life. I only really ever do it when i am on holiday. I can relax and not worry about anything. It might be the sea, the sun or just being on a beach I am not sure. I read books, swam and had such an amazing time. I really neeed it as well as Mark. The second week we went to our first Greek wedding to two close friends. It truly was a beauitful wedding. I felt so lucky to be part of it. I met some really lovely people and to see a couple so in love was wonderful. I can’t wait to our next wedding in october to two more fanastic friends. 

Going into Autumn now the holiday has past the thing that has kept me going for so long when things were really hard. I am planning lots of little things to look forward to. Things to work towards. Hen parties, weddings, friends visiting from far away and spending time with the people I love. I also hope alot of singing!

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Reflection!

I have had a lot of reflection time this week. Lots of moments that have made me truly thankful for what I have. 

On monday night I performed with Kevin for a community group made up of adults with special needs and their carers. It was a truly amazing evening. Even though our music was laid back they were all up dancing and loving every moment. They recieved medals and trophies. Everybody was smiling and fun was had by everybody. We did this as a favour to spotted in ely as Jack from arbuckles donated money to Bumbly bees music group so that I can get more equipment. I am so glad i went and performed. I was feeling so ill with a really rough health week last week and having to keep to the commitments that I had so I did not let anybody down. It gave me time to forget and just be in the moment and enjoy. 

Singing really does keep me going and the 5 months where I couldn’t do it was hell. I hope I dont have that problem again. I am still along way off where I would like to be healthwise. I still need to get the old heart sorted so that I can actually go food shopping, take the dog for a walk. It is amazing how restricted you feel when you can not walk far, you have to plan where you are going? can anybody push me in the wheelchair? Also am I safe. If people drink will anybody be able to inject me. I do not have the independence I used to have. 

I always thought of myself as an Independent woman. Somebody who could look after themselves. I even went to LA by myself. I did meet my lovely bestie out there but did spent alot of time by myself. I flew out by myself and home. Now I have to always be around people. It is a hard adjustment. Least I can drive again so that keeps me going. I can be in my car and feel like I could drive anywhere and that is a beautiful feeling. 

I haven’t written for a while. I got a bit lost in life and just had to concentrate on the people and things around me. Like my sister leaving to go to oz and spending as much time with my family as I could as wouldn’t know when i will see them again. I also felt like did anybody really care what I wrote. Did anybody actually read it, but doesn’t really matter either way as it is a great way for me to get what I am thinking out. I find it hard to talk to people about my problems I don’t want to bother them. Just writing this I feel clearer and ready to start the day. 

This afternoon I am off to perform with @tiaandthebandits at @Cambridgerockfestival. I can’t wait. I have loved all the festivals I have managed to perform at this year but this is always my favourite one for sure. 

Hope everybody has an amazing day!

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one week to the next!

It is amazing what a difference a week can make. I can go from feeling not to bad pretty good to be a complete right off.  Last week was a write off. I managed to take part in bits and pieces but I spent more time in bed then out of it. I napped constantly and my fatigue was horrendous. This week I am catching up with everything and today even managed some swimming and did my exercises outside. I have had two rehearsals. Still napping but getting up and still managing to do things. I appreicate weeks like this week so much. I appreciate if the sun is shining. All the beautfiul flowers, butterfly or robins around me. I love having motivation. It is one of the things that upsets me the most when i have a really bad week or day. When my fatigue is so bad I don’t have the motivation as I do not have the energy to function. I struggle to understand sometimes when people are talking to me. Brain fog is the definition for it. 

It can be hard to get my head around everything as I can go from one extreme to another. One minute I can be absolutely fine the next I can be really ill and needing an injection. I just try to not worry about it and enjoy everything. Sometimes you just have to go with the flow. Life can bring crazy rollarcoasters. You can work hard towards things but fate has a different path for you. I learnt this alot with the many years of illness. It lead me down the singing path and I am so thankful for that. 

I am loving being able to sing again. Music is a huge part of my life and without  I am lost. I had a doctor laugh at me when I said as long as I can sing. After he laughed at me I explained I am a professional singer. Not everybody wants to be a doctor. 

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May to June.

So I wrote a blog post at the beginning of the week saved it to drafts and now can not find it. I am very tech savvie hey.

Looking from one month to the next so much has changed. I am pleased to put May behind me but so many great things have happened. I have gone through so much and learnt so many new things about myself and how strong I can be when I need to be. I have managed to sing again which is such an amazing treat for me. I have visited the beach, I have driven again, touched a star fish and visited the sealife centre. I have caught up with friends and made new ones and became closer to people that I met a couple of times. 

There are so many amazing people in this world and I feel it gets over looked sometimes by all the negative people. The ones that would go out of their way to hurt other people. The recent terriost attacks have shown how many horrible people, evil people their are out there, but it has also shown how amazing human kind can be. The emergency services have to be mentioned as they were amazing. Every single one of them can you imagine what that must have been like to go into something like that not running away from it. All the people that had been in both attacks and had stayed to help people, taxi people, homeless people the list goes on. For me they are true heros. 

You sometimes have to look alittle closer to home too. i am so lucky to be surrounded by amazing people, my parents, my partner, my family and friends. People who stand up and say I am here i will help you any way I can even when things are rough. I try to never take these people for granted you know. I try hard not to take them for granted.

We are only into June by a couple of days and I have had a little hospital trip but I had managed a whole month not going in so that I must remember as a huge positive. I went into an Addisonion Crisis and very fast. I wont lie and say it did not scare me as what good would that do for anyone wanting help to get through this. A blog must be honest, but having the injection there took away all the fear I used to have. I had never had it before and did not know how to would work or if it even would. Once the ambulance people had arrived they taught my dad how to inject me and the difference took only 5 to 10 minutes. i went from being in and out of consciousness to sat chatting to them. Even being in hospital was easier knowing what I needed and tested for striaght away and was home the same night which is unheard of. Today has been rest, rest, rest and taking antibotics to help get rid of an infection i seem to have. 

I am so excited for June I hope to tick off more of my list. I have alot of hospital appointments with different doctors so hopefully these will give me even more answers. I going to try spend the month appreciating all the wonderful people in my life. 

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Small steps!

So this week has been trying to myself back on my feet. Started back at Bumbly bees music group. I was really good and took it nice and easy. I sat and just sung with the children and adults. Bumbly bees music group is so much fun and it is like my own therapy. Seeing the children smiling and happy makes my heart melt. I feel so lucky to have my own business and just be able to keep it going through everything I have been through the past 8 months maybe even longer. The support the adults have shown me have been amazing. I got presents, flowers and cards. It made me feel so special. 

The end of the week has not been as good. i have defiantly ran before I could walk. Yesterday I relaxed with my friend outside but was still to much so today has been relaxing watching films and having a little pamper session. 

You forget how important it is to have a little pamper session and how good it makes you feel. I have just put my jamberry nails on my fingernails and painted my toe nails. Earlier in the week I had my haircut. The small things and to everybody else everyday things, but when I am getting over a hospital visit or just been really poorly it really makes me feel good. My nails always make me smile and make me feel more human. If you feeling a bit rubbish, why don’t you go paint your fingernails or toes your favourite colour. Put a face mask on or just have a relaxing bath. Do not forget to look after yourself, because you really are important.

My health is still up and down, with getting random temperatures, feeling weak and I realise how weak I am. I must give myself time. The good thing is rest really helps. Where I used to rest and it would make no difference I would still be as tired as I started. I feel better with rest. I still have such a long journey to get back to any normal health, better than I have been in a while. I must rest as much as I can. I have alot of things to keep my brain going in between. I really love drawing and writing. I might not be the best artist but I am pleased it looks like what I want to draw so makes me happy. 

For now I am catching up on films I love, watching new ones and recommendations from friends. All in all still moving forwards. 

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One step at a time!

I really feel like I am on a journey to find a new improved Tia. This is my time to start really thinking of myself. I can hear many going finally. I always put other people before myself. Even when I can barely keep swimming in my own life and problems. I want to use the rest of the year to work on getting my strength back in my body. Get myself fitter and as healthy as I can be. To keep my brain strong and my mental health great. Seems to many a simple journey but my illnesses will still be part of me but hopefully instead of them dictating my life, my every move, i will have some control of it. I will be able to have a life again. 

I will take alot of what I have learnt so far with me that it is still important to live in the present. To appreciate what is around me and the people that are there saying I am here for you and standing byside me in support helping me to grow and get through what has been hell. 

i have ordered a book which arrived on friday. It was recommended by one of my friends. It has helped her with her health. It is called Mindfulness for health. I have only read the first two chapters. I have learnt so much already the difference of what pain is. It is written by two people who have dealt with their own health problems and the journey they have gone on. So it is a 8 week programme which includes different mediations each day. It is written by Vidyamala Burch and Danny Penman. 

I am also going to start 365 days of photographs. I use photograph’s for memories and when I am in hospital been using them to remember how much I have done and the amazing memories I have made so far. I have achieved so much in my life already and i am so proud of that. I think it is so easy for everybody to forget what they have achieved. I also want to use the photograph’s when I am at my lowest. I do not believe I will suddenly never be in hospital again or I will suddenly be able to run everyday but I will be able to do so much more and work towards awesome things in my life. The first thing I will try and do is be strong enough to walk, not be in my wheelchair or be on crutches. This will take time but I will get there. I will keep everybody updated on all the techniques I am trying. If you want to join me in my journey your all welcome and could be a very exciting and fun time.

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A new beginning and end to the biggest rollercoaster ride!

So this month has been crazy. Like the worst and best rollercoaster ever. One minute I am down and out the next, a 16 year wait has come to an end. The doctors know what the hell is going on. 

So I will explain from the beginning. I went into hospital just before Easter. My parents had left to go to the Maldives. Myself and my partner were moving into their house to look after Sherlock their dog. Within two days of them leaving I ended up in hospital. 

I had been out on the saturday night to a surprise 30th birthday party. I had fainted and was really quite poorly. I had gone with my camera so that just because I couldn’t dance did not mean I couldnt do anything. I love taking photographs and hadn’t for a while so was excited about it all. I tried some chair dancing. This is dancing whilst sat on the chair not me standing on a chair being wild. Just incase you thought it was. I came over all faint and my heart was beating too slow and then to0 fast. It was a great night and i really enjoyed getting dressed up, but my body didn’t.

The next day I couldn’t get off the sofa. I managed to get out of bed and that was it. There I laid all day. First thing my brain was still working properly. I could think striaght so got some work caught up on whilst I was chilling out, but it got harder and harder to think. I deteriated but got through the night. 

The next day i woke up knowing I should got to hospital. Mark packed a bag by this point I had really deteriorated and lost consciousness. An ambulance was called. 

Normally I am admitted straight away and I will be from now on, but instead I got sent home to come back the next day after a bag of dextrose. This was a rather scary night for Mark and myself I did not want to slip backwards again. Which i did but at a slow rate. I was kept this time and my 4 week journey started. 

The battles I have had in hospital are huge with doctors. Especially A&E Doctors not taking me seriously, not knowing what to do with me. It is a gamble to know what will happen whether one of us will have to fight. I have lost consciousness and been really floppy and doctors have said I haven’t been then checked my sugars and have then all run into action. 

It is nice to know that this is hopefully going to be over. I have been diagnosed with an adrenal deficiency known as Addison’s disease. Yes this is a life threatening illness and could be seen in two lights, good or bad. I am one, delighted, because half the battle is knowing what your dealing with. I have known for a long time that things have been serious and how much I have deteriorated over the last 8 months. This all makes me so thankful to be alive and still here.

I can plan a future, an actual future. Not by the day but by weeks, months and be excited for things. I will hopefully be able to do exercise again. Something I have always loved to do but could not without collapsing after a couple of minutes or having a hypo. This really is the start of new things for me. I feel like my life is actually beginning. 

One piece of advise. Believe in yourself. You know if something is not right in your body. Listen to it and never give up on finding the answer. The people that love you will support even if they do not know how they will in their way and if they do not there will be others out there that will.

I wont be jumping up and running marathons straight away if ever i do not do running hehehe. It is going to still take time and I am really weak, but i have a chance of a life and I will be grabbing it with both hands. I am finding out what i need to know about Addison’s getting the things I need for it and educating those close to me. I can not wait to get the old new and improved Tia back. You can not go through what I have without growing and changing but I am looking forward to getting my sparkle back. 

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Hospital visit

So I am writing my next blog post from one of my least favourite places hospital. This visit has been a rollercoaster ride of stress. Fight with doctors for them to give me the same treatment I have for 5 years which has always worked. Finally managing to persuade them after hypos, fainting and passing out to get them to sort it out. I should have known was going to be rough when took 15 attempts to put a canular in. My arms are black and blue. I would be ready to go home if I could eat, but I am struggling. Everything I try to eat I am in so much pain and feel so sick. The pain relief isn't helping. 

Hinchingbrooke is the hospital I tend to go to he most. Although have been to Addenbrookes this year and Papworth a lot last year. I think things sometimes have to get worse for them to sort it out. They looking at lots of different illnesses, but this stomach pain and sickness is a new symptom one I have not had for a while. 

As long as I am on the sugar drip I am no longer in a crisis as soon as I come off it I go down hill. But I have to fight for my sugar drip every bloody second, my sugars are no way high, they are low normal for me. Even with 10 per cent dextrose. 

People wonder why it put off coming to hospital for so long. Why I try and fight at home. But it can be really stressful being in hospital. I have a Rare disease that we still trying to finalise the diagnosis so doctors a haven't heard of the condition and how I am supposed to be treated and who hates giving sugar to me, As that's the in thing that we must stay off. 

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Photo from yesterday. :)

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Photo from yesterday. :)

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Planning

Thankfully this week has been less stressfull than the last couple of weeks. Well if I am honest this year. When you have a chronic illness it is so hard to think of the future. I struggle to think what I am doing the next day no long think of the rest of the week, month or year. I have got into saying to people that invite me to parties and outings that it will all depend how I am feeling. If its to do with work then I will always try and do it no matter how bad I feel. Which does leave me sometimes in trouble with the people that are around me. They worry that I push to hard, but its hard because if I don’t push I would not do or achieve anything. 

With how things are at the moment pushing is not really an option. My pushing hard last week left me without my speech and weakness all down my left side. So I am very concious about try to gradually build up. My speech is improving with hard work. My doctors haven’t yet even put me in for Speech therapy which is what I have been waiting for, so I straight away started relearning the pronouncation of the alphabet and to be not frightened of talking in front of people. I sound funny there is nothing I can do about it. I can either hide from it or I can laugh along too. The hospital doctor gave me a great website to help. One of the things said that if you get frustrated, angry and upset with what is happening it will make it worse. So I learnt to adapt. Something I have spent my whole life doing. First moving around as my dad was in the army, to my whole life changing when I was 15 and getting sick. Its a great skill when you have it as it can help in some many ways of your life. As I have said before I love puzzles and have treated this as one to solve. People can understand me now thankfully. I do not sound like the bm, bm advert. I can finally hear my voice in my speech, wierd when you can’t. 

I managed to go out last night which was the first time in a long time. I mean out out not to somebodies house. It was a friends 30th birthday party. Two fanastic friends cooked my partner and I dinner and was so lovely, to feel normal. I hear you shout what is normal, nobody is normal. This is true but I have been feeling more and more like an outsider. I worry that if I get sick when I am out people will have to look after me and ruin their night or that I be sat in the corner when everybody else is dancing having fun. I would be the unsociable butterfly. So I took the bull by the horns and went lets do this. I took my camera with me as I realised I haven’t taken photographs for ages. Another passion of mine. By the middle of the night I had a chair in the middle of the dance floor and was dancing sat on the chair. It is the new in thing I tell you. I get tired quickly and did end up nearly fainting later on, but two of my amazing friends sat on the floor with me and we chatted like it was just a normal thing. 

There really is amazing people in this world. I try to be truthfull with what is going on. If I explain people understand my actions and don’t get offended. They do not think I am using it as an excuse not to go to things. If they did they wouldn’t be my friends for long. 

My tip for this post would be. Being chronically ill whether physically or mentally can be very lonely. It is very easy to hide away and think nobody understands what your going through but you would be surprised. There are friends, special groups for your illness that are waiting for somebody like you to open up and come along. It is the reaching out thats hard. Maybe see if a friend wants to come over for a coffee. Start small. The internet is a great source of staying in contact with people, without always seeing them face to face. You can open up without feeling embrassed. Or just contact me and I be that friend that is there for you and help support you. We all in it together. Life can be hard do not think you have to do it all yourself. Whether its a big problem or small if it is upsetting you its a problem. 

Sorry its a long post. Till next time.