Today is one of my terrible days. It’s been brewing since Monday, since we went to visit the Lupus Clinic in London for my check up. So here we go…
I’ve been avoiding going to London for a while, postponing my appointments, my mind has well and truly been distracted with madebysteffieb and it’s definitely better this way.
I started crying from about 3.30pm on Monday and I carried on pretty much into the night. Tuesday was one of these days where I felt like I’ve been in a boxing match, battered and bruised all over, numb inside. Today is complete despair.
I’ve been taking pictures of Dotty all morning and I’m trying to plan my posts online for madebysteffieb, so I can get off the computer and hide away for the evening, I’m wearing my fake smile to make sure I’m upbeat and it’s making me feel even worse than I already do. I’ve got a list as long as my arm of things to do, Feb’s newsletter, make more Cuties, go to the post office (if I could leave the house), a new competition I’ve wanted to do for ages, diet, stop drinking coffee, be positive, etc etc… But I can’t move.
Is this depression? Is it infertility? Is it yet again the complete lack of sympathy or encouragement from my consultants? It’s probably a bit of everything.
I get told about once a day how strong I am, well I don’t feel it. I am completely overwhelmed by everything right now and all I want to do is sleep, forever, but I won’t. I have got a serious case of “feeling sorry for myself” going on and I’m stuck right in.
It’s no secret that as well as my missing bits, I have conditions in my blood which are going to make IVF an even harder task to achieve.
I have a form of Lupus which is situated in my joints mainly. It can be painful and it makes me swell up, I take anti-malaria tablets, I don’t know why, but they help.
I also have low platelets, that means that my blood won’t clot well if anything happened to me. When these get very very low, as mine do sometimes, I’m at risk of severe bruising and internal bleeding, worse case. My platelets vary from months to months but for the last few months, I’m pleased to say they’ve been ok.
Antiphospholipid, AKA, sticky blood… my blood is too thick and I am at risk of blood clots and thrombosis.
So, my blood’s too thin and it’s too thick, depending on what day it is… confused? I am.
All these fancy things have to be factored into my success with IVF of course. I don’t ask for odds anymore, it’s pointless. The way I see it is, as long as there is a chance, I have to have a go.
So, back to Monday and my cheerful consultant, obviously, I’m very proud to announce that I’ve almost raised enough to have a go at IVF at last, and it’s not been easy. She turns towards me and tilts her head; “so, you’re going to have to be under your rheumatologist in Colchester, your obstetrician in Chelmsford, your haematologist (her) in London and your GP in Colchester, throughout IVF, in regular intervals”. “Obviously, because of all these issues with your blood, I have to warn you that the risks are high”.
IF IVF is successful, and the chances are low, I will then face the possibility of developing blood clots, pre- eclampsia, high blood pressure and a high risk of miscarriage throughout my pregnancy just to name a few, there is no “3 months you’re safe” for me.
Considering the sensitivity of any potential pregnancy, I don’t think it’s going to be wise to make me travel from town to town because no one is capable of talking to each other to make it a little easier for me, but apparently it is.
I wonder whether “normal” people go to their GP when they are pregnant and all they get told is how bad and dangerous it’s all going to be?
The only good thing I remember from Monday was when she told me that there is only four of her in the UK and that she “knows” what she’s doing. What about the other doctors though? My GP doesn’t have a clue who I am, he’s suppose to send me for regular blood tests for my platelets, I’ve never once been asked to go in for a blood tests in 4 years.
There is one alternative for us I’ve never talked about, surrogacy. I’ve often been asked about this and if anyone out there wants to have a baby for me, please send in your CV. The trouble is, it’s almost twice as expensive. It’s illegal to pay someone to have a child for you in the UK, however the cost of surrogacy is still heavy. It’s because we would have to pay all the expenses for the surrogate, clothes, medical costs, days off work, IVF and there is more but I don’t know the ins and outs. So it’s never been an option, should I quit my go and carry on with the Cuties to get to twice as much? I really don’t think I’ve got the time.
I’m not stupid enough to ignore the fact that it’s going to be a little bit risky for me to have this done, however, as people keep telling me, I can’t just give up on my dream.
I’m also aware that doctors have to cover their backs, even though they have great lawyers and in my experience get away with most things, but why can’t any of them be a little bit more encouraging? After all, if this was that dangerous, they wouldn’t want to do it, yet they do.
I can cope with anything, I know I can because I do it every day, I can smile, I can do all these things on my list, easy! My friends said I wouldn’t sell a Cutie… I like to prove people wrong.
What I can’t cope with is the constant negativity, this feeling I have that all doctors are against me and don’t want to help, it brings me down and takes me back 6 years ago. I feel like I’m back to square one and I can’t even enjoy the fact that we are finally getting there! I’m so angry and sad inside.
I know it’s going to be hard, very hard and probably unsuccessful, I just want someone on my side to say: it’s ok, I’m listening and I will take care of you and give you the best chance. I feel defeated before I’ve even started.
I tell you what though, I bet you the IVF clinic is going to be amazing and tell me how great they are and how successful they are. I’m sure they’ll promise me they can manage my treatment and they’ve done it lots of time, as I sign on the dotted line and hand over the money.
This blog isn’t great sorry, but it’s today, one of the bad days, so I’m handing it over to the universe hoping it helps me get unstuck, so I can carry on.
If you’re reading, thank you xx