Wednesday, 21 August 2013

MOJO

I have been neglecting my blog recently and I apologise if I caused anyone to worry. I have hit a brick wall at the moment and writing about gastroparesis and how I feel about it etc etc has been an impossible task. I'm finding it hard to concentrate on anything lately. I can't seem to focus or even gather my thoughts. Then I spend forever thinking about what I need to be doing...and then not doing that either! I feel kind of lost but I don't know why.

I thought a break from all of it would help but it seems that once I stopped writing... it all just got harder. I think I have been bottling things up a little and now if I pop the cork its going to end in a meltdown.... if that's not whats happening already! 

I often put on a brave face and tell people I'm ok when I'm not, but when I try telling myself the same thing it leads to this build up of emotions that I don't really know how to handle. I am finding that the longer this goes on the more alone I feel. I have so many friends and family who all care and want to be supportive but I resent the fact that I need it. It sounds ridiculous because I like to get messages and I like to help others too but the simple fact that any of this STUFF is part of my life is enough to put me over the edge. 

So, I avoided the computer and gave myself a break, thinking this would help me rest up, focus on the important things and I would be able to start a fresh once I got my mojo back. 

Turns out, life isn't that easy, I took a break from gp stuff and started trying to live a little. That's
when it hit me really. I WANT to do things, go places, achieve things in my life but the more I try to be "normal" the more obvious it is that I'm not!

I'm sick of the constant reminders and the never ending battle with nausea and pain. Part of the whole problem is that people who don't understand the condition see how much medical intervention I've had and wonder why on earth I'm NOT feeling better after all that input and surgery. Then I start to think like that too, why do I still feel so like this? Of course I KNOW that this is just how it is but having to explain it almost every day gets very draining. When people ask, it's easier to say I'm ok, or I'm much better thanks, because that's what they expect you to say. However, on the odd occasion I have actually tried to explain the whole situation I just get blank stares and confusion...and even more questions that I don't really want to answer.

The support I get from the GIFTuk group, is second to none but I feel that it's my role to offer the support there and not to moan. Everyone looks at me to be the strong one, and I like the fact that being hopeful and lighthearted helps others so much, just, sometimes I need to have a good moan!

Which brings me back to my first point... My blog is my place to break down, my place to say how I really feel so I need to reconnect and write more before I explode... Just let me find the words to tell you and ill get my mojo back!

Step one complete...only 101 issues left to address ; )


Wednesday, 12 June 2013

Food...the good the bad and the ugly!

I'll bet most of the people reading this post will know where I am coming from with this one!

How many times since diagnosis has someone asked you, "Well what DO you eat?"

For me the answer is simple, "nothing" is my reply. This is quickly followed by, "Well, you MUST eat something!"

I have lost count of the times this has been said to me. I came to the conclusion that people react this way because they simply can't imagine what that might be like, so I thought I would try and explain.

No, We have not lost the ability to chew, swallow and ingest food. There are no obvious physical changes such a lumps bumps or obstructions. You can't see gastroparesis by simply taking a picture of our insides. But that doesn't mean it isn't there!

We have to learn to override one of the the strongest natural urges of the human body. You don't just eat with your mouth, you smell it you see it... you want it!

Living with gastroparesis means that instead of feeling contented and energised after eating, we feel so ill that we sit there hugging the sick bowl vowing that  we'll never touch food again! Many people describe this feeling as "permanent stomach flu". Personally, I think that doesn't even come close.

For us to be able to function at all we have to adapt to a whole new way of life. Balancing medication and nutrition is a real challenge from mild to severe cases... it doesn't matter, we are all unique.

So from day to day, we plan our activities around our regimes, avoiding or restricting food to enable us to function at all.

Imagine how it feels to be so sick that you starve your body in order to have a better quality of life? It's not out of choice... it's necessity. Give in to your urges and all hell lets loose! So please don't offer us things, or ask us why we're not eating...

We love food, but it doesn't love us!

Monday, 10 June 2013

Acceptance?

Coming to terms with chronic illness is the hardest battle we face. Some days you feel like you could conquer the world and the following day you just want it to swallow you up!

I go through cycles of emotions that I didn't even know existed before, from optimism and hope to total despair. Part of the "acceptance" process is acknowledging these feelings and understanding where they come from.

I have spent so many hours laying in bed wishing that things were different. In the beginning... it consumed me... until I realised that I was allowing this illness to beat me both mentally and physically. Then, I began to look at it differently. I can't change what has happened to my body, I can't force it to work as it should... but I CAN choose the way I deal with it.

Learning to live with chronic illness is like shovelling snow when it's snowing... but it never stops. Our emotions are just as relentless so you need to learn to pace yourself and allow time to make angels in the snow instead!

Firstly... its OK to hide under the duvet when you need to. Your feelings are perfectly valid and you shouldn't feel guilty for needing to hide sometimes. Don't beat yourself up for it... take the time, get it all out and move on to the next day. Bottling things up and putting a brave face on it is a NO NO, because if you don't allow yourself that time, it builds up, you get exhausted and your symptoms are harder to deal with.

Feeling like you are missing out in some way and resentment are very common, after all most of us had a healthy life of our own before we were hit with gp! It's very hard to keep up with friends when you don't get out much and hearing their stories can bring you down, but its important not to cut yourself off from the real world either. We all need a little "normal" in our lives!

So I'd better get to my point... Acceptance is about acknowledging that you HAVE gastroparesis and your life is different now. It doesn't mean accepting that this is forever... after all none of us know what's round the corner! Live the life you have NOW and stop looking back to what you feel you have lost. Friends will come and go weather you are fit or healthy... at least you now know that the friends who are still around...are worth hanging on to!

Find the positives, let go of the past, and look to the future with hope and courage... you are stronger than you know... you just need to find it. Put down the shovel and lay down in the snow xxxx

Monday, 6 May 2013

Chasing Rainbows

Oh my goodness!

Where do I start to explain my crazy roller coaster ride? Quite honestly, my head is still not quite in this world but I'm getting there slowly but surely. It's been three weeks since I came in for my "minor" surgery and I have only just started to turn the corner.

My physician came to see me shortly after my last post and we finally discovered what has been making me so ill. She didn't want to dismiss the possibility that there was something sinister going on  since my blood tests indicated that something was going on with my liver. So, I headed off to ultrasound to get everything checked over again. Usually this is a safe and painless test, however, when you have just had surgery....it's is definitely NOT painless or easy at all! Even laying flat on the bed was torture, never mind having someone rubbing and pressing on my surgical wounds! She must have checked just about every organ while I was there, from my liver and kidneys to my spleen. As per usual the result came back "normal" which at the time, was incredibly frustrating because SOMETHING was definitely wrong and yet again no one had any answers for me. I was left feeling completely at sea wondering what on earth was going on with my body to cause all these issues. After reviewing the scan and discussing my case with my GI in Durham my physician returned with a simple trusty stethoscope. She sat and listened to my tummy for a good 5 minutes.... not a single sound was coming from my bowel... I finally got my explanation, the surgery had caused my bowel to completely shut down. It was totally unexpected and had already been going on for longer than is normal after major bowel surgery, let alone the minor op I had. This is very scary stuff and I was beside myself with the constant vomiting, despite having a auctioning NG tube to relieve it. The vomiting was so severe at one point that having the tube in there flicking around caused my stomach to bleed... You can imagine my horror when I went to aspirate the tube and all that came out was fresh blood! At this point, I had totally had enough and decided to have the tube taken out to prevent any further damage. I went solo with the vomiting for 48 exhausting hours before they finally persuaded me to give the tube another shot. By this time I was just too tired to argue and would have done anything for a few hours respite.

When it comes to gut motility issues, there's little that can be done to help and the only option available to me was to ride the storm and hope that my gut would wake up on its own. This is not what you want to hear when you have been vomiting constantly for over two weeks solid and finding the will to keep going was getting harder by the day. Those of you who know me well will know that I always look for the positives and try to smile through it all, but this time I really did hit rock bottom and my family and friends could see it. How do you stay hopeful when there is no light at the end of the tunnel? I held on as tight as I could and tried not to let my children see how sick I had got. I continued to leave the ward with them when they visited and sat and watched them have dinner in the cafe, holding back the tears and the pain as best I could. They ARE my light at the end of the tunnel, and if anything is worth fighting for its my children!

After having a break from my TPN last week I was finally starting to feel a little more human. The vomiting had reduced from 3ltrs a day to 1&1/2 litres and I found the strength to start kicking back! My positivity returned and for the first time felt like I COULD win the battle. My success was short lived though and unfortunately, as soon as they re-started my TPN my symptoms worsened and my liver began to react again. This terrified me, my TPN is my life line, I need it to survive and the fact that my body didn't seem to want to know anymore was not a good sign.

We decided between us that giving my body a rest was the best way forward and my dr agreed to let me decide if I had the TPN over the weekend or not and gave me control over my fluid requirements so I could have extra if needed, depending on how much I was loosing each day. Having control over my own care is always the best way forward, I know what I need and what I can cope with so to me, this was like regaining a little control over my out of control body. I needed that... When everything in your life is upside down, being able to control even the slightest thing gives you the courage to fight back. It might sound silly to those who have not walked in my shoes but believe me, it works!

So, I had another rest from feeding and gave myself a break... however, I WON'T be beaten by anything and I need to get back on feet. I allowed myself 24 hrs to sleep and let things settle and gave it another shot on Saturday night.... BINGO a full nights sleep and minimal return from my NG! I was so pleased with myself for giving it a shot and my fighting spirit returned! My family suggested I  try just having the TPN very other day for a while but I wasn't happy with that... if I could do one night, why stop there?!

It's now Monday evening and I'm on my third day in a row with no vomiting and successful feeding! I can hear my tummy starting to wake up and I can see the rainbow I've been chasing for so long. I'm not fully there just yet, but I know if I stay strong and positive, the only way is up.




Sunday, 28 April 2013

Surgery and the aftermath!

I'm not up to writing a long post right now but I wanted to update everyone because my inbox is full lol.

I had surgery last Wednesday (17th) to have my gallbladder &pacemaker removed and to get a new jejunostomy tube for my medication. I was supposed to be here for 2 days but as you can tell, I'm still here 11 days later with no sign of being anywhere near ready to go home.

The surgery itself went ok and a subsequent CT scan confirmed that structurally everything is ok. However, since the surgery I have been vomiting. Not just a little, I'm talking anything up to 3 litres in 24 hrs. They have no idea why this has happened or how to make it stop. I'm on 3 different types of anti-sickness meds yet it just won't stop. Sleep is becoming a big issue as I'm up most of the night with it. Of course lack of sleep with the added nausea and vomiting have put me on a real downer.

they are finding it hard to get enough fluid in to maintain hydration because my TPN runs for 12 hrs a day at a fixed rate leaving 12precious hours to cram in extra fluid. I have lost 8lb this week alone which is a real concern to me because I was more or less stable with my weight before I came in.

I'm waiting to see my physician tomorrow because so far I have been under the care of the surgical team who know little about my condition and are unable to offer advice on how to address the matter. My surgeon came the other day and said its possible that this will be my new "normal" but I just can't accept that! I hate the way they give up so easily when they don't know what to do.

I will post again soon if I'm up to it and let you know if there's any progress x

Love and hugs to all my friends and members of the GIFT support group for all your lovely messages, you keep me strong and for that I am eternally grateful xxxxx

Thursday, 21 March 2013

Charity Update

Hi guys,

Just a quick post to update you on the progress of the Gastroparesis charity I started. Many of my Facebook and twitter followers get regular updates on what we have been doing but for those new to the page here's where to find us and how you can help.

The charity is called GIFT standing for : Gastroparesis &Intestinal Failure Trust

You can find us at: www.giftukblog.blogspot.com please take a look at our fundraising page where you can earn crucial donations for GIFT without it costing you a penny extra by registering with Easyfundraising (direct link available).

The support group currently runs through Facebook and can be found at: www.facebook.com/groups/giftuk

And finally our awareness campaign can be found at: www.facebook.com/giftuk

We have had some excellent feedback from our existing group members and hope to expand the support network over the coming year. We are currently building a database of members and invite anyone in the UK to come and join us in making a change. If you would like to be added to the database please email the GIFT team at: giftukawareness@gmail.com

We are currently looking to develop relationships with healthcare professionals with an interest in motility disorders. If you work in healthcare and would like to help in some way please don't hesitate to contact us! We are especially interested in liaising with Dietitians, General practitioners and Researchers.

We have some great fundraising activities planned for this summer with some crazy people prepared
to jump out of a plane for their loved one! If you would like to hold a fundraising event of your own please contact us and we can provide posters, collection boxes, sponsorship forms and information leaflets. We can also supply awareness bracelets for small fundraising events. Photographs available on our blog.

Finally, can I please ask....share this among family, friends and anyone who will listen so we can start making a real difference to people's lives!

All proceeds go directly to helping those who's lives have been effected by Gastroparesis and intestinal failure.






Thursday, 14 February 2013

Enough Is Enough!

Time for an update I think!

I worry that my blog sometimes sounds really repetitive, not much changes around here I'm afraid so more of the usual coming your way! 

The problem with not updating regularly is, that I can't always remember everything thats been happening. My memory is shocking and after 3 years of this and all my appointments etc kind of blur into one these days. 

If I'm honest, I feel low. I can't put it down to one thing thats making me feel like this, I just feel completely overwhelmed by everything. Not just health issues but life in general can be a bit of a challenge sometimes. Being ill just complicates things further. There are times in your life when you need to be on top form so you can be strong for others, and that's just how it should be, yet I feel like I'm failing my family because I just can't deal with any more! 

I won't bore you with the details of life's craptastic twists and turns but someone put a good word in for me and make it stop....Please!

Health wise, I'm tired of fighting. I am guessing that since I am back to a healthy BMI this is probably going to be as good as it gets... sound good? Nope not really. I might "look" better, I might be a little stronger but that doesn't reflect how I feel. I still can't eat, I still get pain and I still feel sick, that never goes away, no matter how much I want it to!

It's not just hard on me, its hard on my friends and family too, and there comes the added layer of "guilt and regret". When you fist get sick, you go through "the grieving process", what nobody ever tells you, is that you don't just go through it once, you continue to go through the 7 stages in a kind of permanent cycle!

The catalyst to repeating the seven stages? Every trip to the doctors, every consultation and every meal you have to WATCH someone eat! That is what get's you, but there's little you can do to avoid these catalysts! It's impossible to avoid any of these things because they are such a big part of your life...and staying alive for that matter! 

So which one set me off on todays rant? All three.

I had my NJ tube replaced a couple of weeks ago, during which time my consultant said she didn't want to do any more because it's just not fair to be going through tube placements without sedation, especially when they need to be done so often. She said that she would arrange for me to see the gastro surgeon at my next TPN clinic to arrange a surgical jejunostomy again (for meds).

So... I get over the tube placement, have the week from hell with my symptoms and turn up for clinic the following week with my list of questions.

What actually happened? I got rushed through clinic like jack lightening and my meeting with the surgeon consisted of a phone call between him and my consultant. I didn't get chance to blink before I was sent marching up to pre-op assessment with my paperwork! Both my mum and I came home wondering what had hit us, that lady is like a bloody tornado she thinks so fast! She is undoubtedly very clever but she is always ten pages ahead of where you are by the time you see her, which can be incredibly confusing! She said they would do the jej tube, remove the gallbladder and take some new full thickness biopsies, however, when I looked at the pre-op sheet, it said jej tube and gallbladder so I'm not sure on the biopsies now...it was so rushed I can't recall much of the conversation!

I like my nutrition consultant, she IS very efficient AND get's things done but I think she sometimes forgets that it's not just a procedure, it's not all in a days work for me, and just because I'm used to the system doesn't mean I'm ok with it all. 

In fact that's why I'm NOT ok with it! 

I won't settle now until I at least get my follow up letter outlining what we talked about from her perspective because I don't have the foggiest! 













Friday, 18 January 2013

Writers Block!

I don't claim to be a writer by any stretch of the imagination,  but I do have writers block!

Maybe it's not a lack of something to say but rather...I'm sick of the subject. I feel like I've come to a bit of a road block and I'm swinging from not wanting to talk about it anymore to wishing I could. I'm not saying I don't have support, I do! I have a great family and a truly amazing best friend, not to mention all the friends I've made through here! However, sometimes those are the people I least want to speak to. Not because I can't...I simply don't want to. It's kind of hard to explain hence "writers block".

The only way I can explain it that makes any sense is to compare it to the kitchen bin...don't laugh, I've been thinking about how I can put this into words for ages. Yup...the kitchen bin was the best by far ha ha.

Anyhow, if your house is anything like mine then you will know what I'm talking about!
The way it works here is, the bin gets full. No one wants to empty it, so they start trying to push everything down to avoid the job. Anything deemed too large for the overly crowded bin squashing exercise will be duly placed next to the overly crowded bin. This continues until someone eventually tries to add one last thing and it backfires like a game of Jenga. Then they are forced to empty the bin! Then the real fun starts, as a result of cramming the bin, the bin liner isn't strong enough and then you can't get the liner out. This makes it a messy job so next time it needs emptying it becomes someone else's job because you did it last time...and it was messy!

Confused, why not just empty it regularly and it won't get like that? Well, that goes for people too. We need to empty the mental dustbin regularly. Get rid of the rubbish and you won't end up in a mess. My problem right now is, I've run out of liners! I don't really want to discus it with anyone close because I want to protect them and they live it all with me enough already. To begin with, my group of fellow bendies and Gastro warriors was the perfect solution to that problem. However recently, I find that I don't want to go there either. Not because I can't, but because the people there have become special to me too! Yes we can give encouragement, advice and most of all, friendship but that's the problem...talk to anyone about anything in the world, name your subject but you will always get one of those three things back, encouragement, friendship or advice lol.

So I finally get to my point...and believe me this has taken a lot longer to write than it did to read!

I don't want any of those things, I just want to empty the mental dustbin... but I don't want encouragement, advice or friendship because I can't give those things in return right now...at least not until I've emptied the bin!