Rambling and a thank you!

Back in the saddle, so to speak. I've been very overcome with emotions this week. From good to bad, happy to sad. It's been quite the rollercoaster but I think I have, mostly a handle on myself. Old anxieties have crept up from the crevices of my mental filing system to test me once again. Although my legs have been like jelly, my hands shaking uncontrollably I've got through these recent bouts of panic. My Endo seems to have settled again which is great cause for happiness. It really does feel as if my body is fighting back to regulate as much as possible and after all these years of treatments and side effects I am absolutely thrilled to have some sense of normailty. I have been using some relaxation techninques I've learned over the past few years and also meditating.

Yesterday I was going through old paperwork, deciding what to keep and what needed to be thrown out. I stumbled upon a gag present of a giant lollipop that I know to be at least four years old. Unopened but still,  I was turning into a bit of a hoarder. So the clearing out and cleansing process was begun. There were a few minor stings, one in particular caught me by surprise. I stumbled upon a pair of booties I had bought some years ago. They are still in the bag with the receipt. It's strange the things you forget about and yet the effect they can have on you when you find them. It got me thinking. I'm not where I thought I would be at twenty-eight but I'm not doing badly either.

The past two weeks I have been really unwell. I had quite a bad chest infection and was on antibiotics plus the Endo flare. I then had three cysts burst on my left ovary. It completely drained me of all energy. I couldn't concentrate on studying. The information was out of my head the moment I read it, nor could I go out because I physically couldn't move due to the pain. I fell twice. The first time I got a nice whollop on my cheekbone, thanks to Arnica cream and tablets though I didn't bruise and the redness is pretty much gone now. The second time I just grazed my hand but my head took a nice bang. Other than that I've been doing as I was told. Heavy bleeding=elevated legs=plenty of fluid=iron=rest. The formula the hospital always drilled into me. When you have chronic pain like this some days are inevitablly worse than others.

It got me thinking of the whirlwind this year has been so far. I look at the calendar and wonder where the months have gone. I'm at a completely different place than I would have thought even six months ago physically and mentally. It's been like coming up for air (corny, but it's the only way I can think of explaining it). I've been through some changese and since this year's Endo March I've found greater support and understanding and have reached many more people with this blog than I ever thought possible. I think really what I'm trying to say is that I am grateful. For every one of you who read this, whether you've been with me from the start or have just begun the journey yourself. For my very understanding family and friends, my Mum and Bobi especially. For my boyfriend, who from the beginning, when we were just friends would read my blog and has never made an issue of my Endo. I know I f**k up sometimes. I can be an awful scatterbrain. I get overwhelmed by emotions and sometimes zone out into my own thoughts.

I have weaknesses, flaws and I'm going to make more mistakes long before I'm through here but I am grateful for the wisdom I have gained through each life experience. My tastes have changed of course. I'm learning each day and will never know enough to satisfy myself. I have promised myself though to make the most of each good day because you never know what tomorrow will bring. I feel spiritually I am finding my centre, a place where I feel connected and at ease with my beliefs. My curiousity leads me to seek out answers that most likely aren't available to me and yet I'll still look. It's about the adventure. A wise woman in the form of my Mum has a saying "what's for you won't pass you". It's become something of a motto for life really and it's a nice positive way of thinking about things.

#1 after Primolut (Warning, bad Endo face)

I'm glad I made the most of my painfree time. Because here comes the flare up and the pain.

So I've just started my first period since coming off Primolut. It was 27 days, not bad for me. I'll take that all day but it's still early days yet. The first day which was the 19th wasn't too bad pain wise. I was in pain but I still manage to leave the apartment and spend a lovely afternoon with my Mum and Sister. That evening though I began to feel very uncomfortable,  too hot, legs were cramping and I knew I needed to get home.

The night of the 19th was horrible. The pain kept me awake. It felt like both ovaries were being pulled, stretched and twisted. The bleeding as usual is heavy, a lot of black clots which sometimes are painful to pass. I was exhausted yesterday. Literally had to crawl to the bathroom I was in that much pain. What worries me is the painkillers I am on aren't doing anything. I'm not getting any relief this time. I tried having a bath, it just irritated me more. Tried breathing exercises for the waves of muscle contractions and this was somewhat helpful. It helped to focus on my breathing to get me through those intense bouts. Like a ripple crossing my pelvis, the contractions come and go but are so extreme they have made me collapse and cry out with pain.

I also tried meditating, just clearing my mind and using some relaxation techniques I have learned. It was like being interrupted by a demanding toddler. The pain wants my attention all of the time.

I'm thinking I may try the Castor Oil Packs. In this weather keeping a heat pad on its so difficult. You run the risk of dehydration if you're not careful :-) Plus with the hot water bottle I accidentally burned my leg and it blistered. Don't want blisters on my stomach.

The boyfriend keeps telling me basically how he has no faith in the treatment here in Ireland and believes the only way for me to find relief is through surgery. He wishes strongly that I would visit his homeland and see Doctors there.

I'm not sure. I've reached my limit with Doctors to be honest. Treatments that haven't worked and now feeling like my only option is progesterone or nothing.

I'll look for an alternative thanks.

Hope you ladies are all hanging in there.
Love

XxxX

It's time to begin

It's official. I have gone one full week without a flare up or extreme pain! (I've had some pulling on the left ovary but it's minute) I'm feeling quite positive about this recent new lease on life. I'm not currently on any treatment either which is a nice break to be honest. I haven't taken any Primolut now for over two weeks and the headaches I was getting have already disappeared. I know I'm prone to migraines but it was everyday with the tablets.

I digress. I want this post to show really how positive I feel both mentally and physically at this very moment in time. There are several contributing factors to my attitude. I've mended friendships, begun new ones, strenghtened bonds and am in a loving relationship. I've also let some people go, woken up to alot of bs and I think, as corny as this is going to sound, grown as a person.

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I've never really been able to find the words to describe how having this illness has affected my mental health. Physically, yes fine, I'll talk no bother at all. But when it comes to opening up about what's going on inside the noggin, well that's a completely different thing already. I've created a safe for my mind. Only I hold the keys and only I decide who gets to see inside.

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Until now. It's been a very long and bumpy road, from first symptom to diagnosis and at times I have literally broken down not knowing if I'll ever feel pain-free, ever conceive, ever have a somewhat "normal" period (not one that lasts over 13days), ever have times where I can forget about my illness and just live. Just be me. Not the girl who has Endo and can't move because she's in such extreme pain or is so tired from blood loss that she has no energy or is going through depression because it's all just too much.

I have lost friends because of my illness. They would reach their limit of asking me to go out for coffee, or a movie, even just a chat and I would be crippled with pain. But, me being me I didn't fully explain what was going on with me because I didn't want them to look at me or treat me like I was sick. In truth, I was afraid if I told them about my Endo that they would walk away. Turns out the joke was on me. Not telling them realised my fear.

Over the years I have found my own coping method as I suppose everyone does given any difficult situation. I have had relationships. Some lasted quite a time, some were very brief. I remember having "the talk" with each boyfriend. When you are dating for a period of time and things get serious, naturally you start sharing your ideas for the future. I always felt it best to explain my illness early on, be up front and get it out there. This, I felt would avoid me getting in too deep. (I have a really terrible fear of being hurt due to past experiences. I'll deal. It's a work in progress). Especially as there's a huge question mark over my fertility. They all reacted well; mainly because they didn't fully comprehend what I was telling them. "Oh you have bad periods? Doesn't every girl?" Eh, not like this.  All of them at some point later on would come to me and want further discussion which of course I was happy to oblige. That's when the talking would get serious. I remember one guy actually looking it up on the internet the evening after I told him and then ringing me with a list of questions asking me about all of my symptoms so he could check them off one by one and suggest treatments for me. He was not a qualified Doctor and became a bit too controlling. It was too full on for me but probably his way of coping. Needless to say that ship sailed a long time ago.

As I got into my twenties and began serious relationships the topic of having children would occur. I would flat out shut this down. I realise now it was out of complete fear, after having gone through fertility treatment last year and trying to conceive for the previous three I know now that I was terrified that if I allowed myself to want something that much, to even think something positive could come out of this situation that my heart would be broken.

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Of course I never talked to anyone about how I was feeling or I would have known the rationale of the situation. There are other options and getting stressed is not exactly going to help me out. My life became consumed about getting pregnant. It was, period, intercourse, ovulation tests, pregnancy tests, negative, period, repeat. You get the idea. Then the fertility medication (Clomid) came into play. This, for me was a horrendous experience. Because my ovaries were being over-stimulated I was subject to side effects. The mood swings were uncontrollable. Happy and laughing one minute, crying the next. Physical pain from both ovaries reduced me to bedrest for days, sometimes weeks. It was unbearable.

I came to think; "I can't do this. How can I look after a baby when I'm in this much pain?" I decided to stop trying, to come off the fertility medication and to focus on rebuilding myself. I've realised that for me having a child is not the be all and all of the world but having a quality of life is defintiely a good place to start. I have been fortunate enough to have a good support network and a few really good solid friends who have stuck with me. I am grateful each day for these people in my life because when the bad days come you certainly do find out who's actually willing to be there for you.

I'm feeling much better now than I have in years and the only things really that I've changed are my relationships, my attitude and ok maybe my hair. Do I know how long this reprieve will last? Of course not! But while I'm feeling this good I intend to make the most of it. The next time I have a bad day I'm going to look back on this and remember this very moment where I'm typing in my favourite spot in my apartment, my coffee's gone cold, dishwasher is clanking in the background and my boyfriend's brother Olly is over for a visit. We stayed up last night and shared some white wine and a lot of laughs. The previous night my Bobi stayed over and we watched American Hustle and sniffed each other's nails. Also last week my Bobi and her friend visited Rodney and I in our apartment. I cooked, we had some drinks, listened to music, joked laughed and even had a little sing song. All pain-free.

As always love to my beloved Endo Sisters.

XxxxX