Our 2 angels. xx

Our 2 angels. xx
Rinty and Spring. xx

Odd One Out. A poem written by Sarah Edwards.

Why oh why are we odd ones out,
Night after night, I dream of more,
Time and time again, I say to myself,
The longing,wanting,hurting, feels so sore,
Will it be different for us,
No, I don’t seem to think,
Friends,family don’t understand,
Our feelings, our yearnings, our hopes and dreams.
Oh, there she is, the barren one,
Nothing can fill this empty space,
In my hearts desire, this tragic place,
In enters the stress, failure and desperation.
Just the same, month in, month out,
Soon the years begin to race by,
Why us, why me, why not one day,
Whatever did we do wrong to live this way.
Children laughing, playing, having fun,
Sounds of happiness and joy,
But here, there is just frozen silence,
For ever, feeling the pain inside,
People think in family ways, planning this and that,
Days out at the zoo, picnics and the seaside,
Bucket and spades, sand in your shoes,
We would love this, if only God would choose.
Empty homes, empty rooms, empty wombs,
Just us two, as one, as ever before,
Don’t get me wrong, the strong love is there,
Will always be, I will love you ever more,
Friends, colleagues,neighbours, forget you have none,
Just everyday planning of family fun,
This is all so easy and normal for you,
Then why oh why, cant we share it too…

Tuesday, 29 November 2011

Living with daily pain..

Letter to non chronic pain suffers

I just read this letter, posted on another site, and thought it was excellent.

"Letter to people without chronic pain (applies equally to chronic illness)-
Having chronic pain means many things change, and a lot of them are invisible. Unlike having cancer or being hurt in an accident, most people do not understand even a little about chronic pain and its effects, and of those that think they know, many are actually misinformed.

In the spirit of informing those who wish to understand, these are the things that I would like you to understand about me before you judge me ...

Please understand that being sick doesn't mean I'm not still a human being. I have to spend most of my day in considerable pain and exhaustion, and if you visit, sometimes I probably don't seem like much fun to be with, but I'm still me - stuck inside of this body. I still worry about school, my family, my friends, and most of the time I'd still like to hear you talk about yours, too.

Please understand the difference between "happy" and "healthy". When you've got the flu, you probably feel miserable with it, but I've been sick for years. I can't be miserable all the time. In fact, I work hard at not being miserable. So if you're talking to me and I sound happy, it means I'm happy. that's all. It doesn't mean that I'm not in a lot of pain, or extremely tired, or that I'm getting better, or any of those things. Please don't say "Oh, you're sounding better!" or "But you look so healthy!" I am merely coping. I am sounding happy and trying to look normal. If you want to comment on that, you're welcome.

Please understand that being able to stand/sit/walk for ten minutes doesn't necessarily mean that I can stand/sit/walk for twenty minutes, or an hour. Just because I managed to stand/sit/walk for thirty minutes yesterday doesn't mean that I can do the same today. With a lot of diseases you're either paralyzed, or you can move. With this one, it gets more confusing everyday. It can be like a yo-yo. I never know from day to day, how I am going to feel when I wake up. In most cases, I never know from minute to minute. That is one of the hardest and most frustrating components of chronic pain.

Please understand that chronic pain is variable. It's quite possible (for many, it's common) that one day I am able to walk to the park and back, while the next day I'll have trouble getting to the next room. Please don't attack me when I'm ill by saying, "but you did it before!" or "Oh, come on, I know you can do this!" If you want me to do something, then ask if I can.

In a similar vein, I may need to cancel a previous commitment at the last minute. If this happens, please do not take it personally. If you are able, please try to always remember how very lucky you are -- to be physically able to do all of the things that you can do.

Please understand that "getting out and doing things" does not make me feel better, and can often make me seriously worse. You don't know what I go through or how I suffer inmy own private time. Telling me that I need to exercise or do some things to get my mind off of it may frustrate me to tears, and is not correct if I was capable of doing some things any or all of the time, don't you know that I would?

another statement that hurts is "you just need to push yourself more, try harder ... " Obviously, chronic pain can deal with the whole body, or be localized to specific areas. Sometimes participating in a single activity for a short or a long period of time can cause more physical pain than you could ever imagine.

Not to mention the recovery time, which can be intense. You can't always read it on my face or in my body language. Also, chronic pain may cause secondary depression (wouldn't you get depressed and down if you were hurting constantly for months and years?), but it is not created by depression.

Please understand that if I say I have to sit down/lie down/stay in bed/or take these pills now, that probably means that I do have to do it righ tnow - it can't be put off or forgotten just because I'm somewhere, or am right in the middle of doing something. Chronic pain does not forgive, nor does it wait for anyone.

If I seem touchy, it's probably because I am. It's not how I try to be. As a matter of fact, I try very hard to be normal. I hope you will try to understand. I have been and am stilll, going through a lot. Chronic pain is hard for you to understand unless you have had it. It wreaks havoc on the body and the mind. It is exhausting and exasperating.

Almost all the time, I know that I am doing my best to cope with tihs, and live my life to the best of my ability. I ask you to bear with me, and accept me as I am. I know that you cannot literally understand my situation unless you have been in my shoes, but as much as is possible, I am asking you to try to be understanding in general.

In many ways I depend on you - people who are not sick. I need you to visit me when I am too sick to go out ... Sometimes I need you to help me with the shopping, cooking, or cleaning. I may need you to take me to the doctor, or to the store. You are my link to the normalcy of life. You can help me to keep in touch with the parts of life that I miss and fully intend to undertake again, just as soon as I am able.

I know that I asked a lot from you, and I do thank you for listening. It really does mean a lot.

-Author unknown.
  • Monday, 28 November 2011

    Another horrible pain day. :(

    Looks like being dosed up on my max dose of painkillers again. So that's another day spent with a foggy head in a daze. I'm feeling down as I haven't had the pain this bad for at least 8 days. At least I'm not being or feeling sick on them now after getting yet another tablet for that. I must rattle. Lol.
    I've had a few down days with just feeling a bit emotional over certain things over the weekend.
    Anyway let's see how the week goes shall we.

    Tuesday, 15 November 2011

    My endo

    Ive always had very painful, heavy periods, to the point where ive been to frightened to go anywhere. So in 2010 i finally found the courage to go to my GP. They tried me on tablets to start with, but they didnt help. So i was refered to a gynae. In 2010 the hospital performed an endometrial ablation, a biopsy and had a good look round and found endometriosis. The ablation worked well, i was period free for a whole year, woohoo. But March 2011 they came back, boy they were so painful, painful, did i mention they were painful.

    I went back to my GP who arranged a scan and sent a letter off to the gynae to see me. I had my scan in May 2011, my GP said it showed ovarian cysts and fibroids. I finally got my appointment at the hospital for 18th August, some 3 months later. In the meantime im in pain and off sick from work.

    Off i went to my appointment, after 3 hours of sitting in the waiting room, a nurse fetches me to check my BP, it was 165/110, its high, no wonder after feeling anxious waiting for 3 hours, anyway i go in see my gynae, but it wasnt him, it was an understudy of his. She looked at my notes and said right this is what we are going to do. You will have an injection called Decapeptyl , i hadnt heard much about this, i asked her about it but she wasnt really very helpful, I was given this injection. I left the room virtually in tears after all the waiting round and the general feeling of missinformation about the jab. When we left the hospital we had been there for 4 hours...

    I went to my own GP to explain what they did. She told me i will need 6 monthly injections which i hadnt been told. Decapeptyl is a hormone which shuts down your ovaries and brings on an early menapause. It is often used in men in the later stages of prostate cancer. !!!!
    Horrible side effects come with it, the ones i have are hot sweats/flushes, headaches, memory loss, confusion,weight gain , acne , bone and joint pain and being in a permant foggy feeling in my head..
    I was prescribed some other hormone tablets to take alongside the monthly jabs to help with the effects. I have also been prescribed some strong painkillers tramadol and diclofenac. One of my main concerns is getting dependant on them.

    After 3 months of my jabs on the 8th November 2011, i went for a follow up with my gynae, guess what i didnt see him, just ANOTHER understudy. She asked how i was getting on, she arranged another scan on the 18th November to see how things are, and to see if anything has changed. Then i have to go back to hospital on the 20th December 2011, the gynae will then decide if he needs to do a lapraoscpy.

    I feel a bit upside down with it all to be honest, i feel ive been fobbed off with a few things, im still getting pain, i grant the painkillers help, but im still off work. Nothing will be done now until next year.

    We will have to see what 2012 brings me. I hope it will be a better year, please tell me it will...Its got to better than 2011 hasnt it.......

    I had years of this.......

    Step 1: Expect arrival of your period
    Step 2: Check toilet paper hourly
    Step 3: Feel slightly hopeful when your period is 30 minutes late
    Step 4: Keep checking toilet paper hourly
    Step 5: Light spotting
    Step 6: Insert swear word
    Step 7: Begin crying on the toilet
    Step 8: Random thoughts include: Is this really my period or is it implantation bleeding?
    Step 9: You still remain 1% hopeful but you just know it’s over
    Step 10: Check toilet paper again
    Step 11: Bleeding gets heavier. Infertile sobbing and runny nose begins
    Step 12: You don’t have any tampons/pads because you refused to buy them last month. Run to store
    Step 13: Another pair of underpants ruined
    Step 14: More tears and increased moodiness begins. Husband/partner doesn’t understand why you’re crying on the toilet seat
    Step 15: Call fertility clinic and sob into the phone… “Hi, it’s Infertile (insert your name). I’m calling on my Day One….”
    Step 16: Screw you, Folic Acid pills. You are not taking any this week
    Step 17: Buy a large decaf highly caffeinated coffee, chocolate and a bottle of wine. Enjoy
    Repeat next month.
    The Period. Punctuation for the end but also meaning a new beginning and starting fresh.

    19 Responses to “#645 Finding out you got your Period… Again”

    Sunday, 13 November 2011

    Busy week ahead

    This week i have several apppointments with the doctor, the nurse for another injection, then on Friday i have to have another scan to see whats going on.
    Im feeling very down at the minute, i have some new painkillers Tramadol they are helping with the pain, but i dont want to take them forever and become dependant on them :(
    Ive been off work for several months now, but i still dont know when i can go back.
    Since having the monthly hormone injections, my brain feels likes its been fried. I cant remember things, i forget things in mid sentance, it just wants to make me cry, im only 40...

    Tuesday, 1 November 2011

    Pain, Pain, Pain go away

    Lots of pain today, please go away, it feels like my left ovary is going to burst, i feel sick with it too......

    1st November, 2011

    Some good news today, i have won a competition on the internet, to donate 100 toys to a childrens charity.
    I have chosen The Childrens Cancer and Leukeamia Group in Leicester. xx

    Watch this space..Our journey is coming soon.

    Our whole journey through the cold world of infertility is coming soon...