Lost Dreams

Lost Dreams

MRS left me with a broken heart...

As a child I loved playing with baby dolls, playing house, pretending to be a mummy. I think a lot of people that have problems being accepted and crave that acceptance and love feel drawn towards parenthood. If you are a parent you get that special bond with a child and unconditional love from someone that no one can take away from you.

Holding a doll I got for Christmas, with my sister; Kerry

Being a mum is something I knew from an early age that I wanted for my future, I didn't spend time imagining the perfect wedding or the great big house that I would live in but I did imagine the children that I would have, the names I would call them, the places we would go together, the things we would do.

Holding my baby cousin

Back then I never thought that I would be one of those people who find out they can't have children, who discovers that everything they had planned for their future, those dreams that kept them going through the tough times would never be a reality but it happened, my Adrenal Gland stopped working and subsequently I don't produce steroids or hormones anymore.

I was in hospital for two weeks due to the fact that I was having constant flare ups and my lovely specialist Dr Vyas, of the Royal Preston Hospital, decided to admit me and try to get them under some semblance of control by administering IV steroids over a two week period.

(I should clarify that Dr Vyas is not a specialist in Melkersson Rosenthal Syndrome, he is actually an acute respiratory specialist and I saw him because my illness causes breathing problems, including a paralyzed right hemi diaphragm, however as no one was taking care of me with regards to the MRS he tried to locate a specialist, in fact he has searched the world for one, but unfortunately he came up empty handed and so has since been coordinating my care himself. Without him it is safe to say I would be lost in a very vast system and I am eternally grateful for the fact that he has taken me under his wing.)

So there I was stuck in hospital, hating pretty much every second of it. Lucky for me I had Amy loyally traipsing to and from the hospital every single day and I somehow managed to get through the necessary fortnight of being practically bed bound and seeing nothing but hospital grounds while having drugs pumped through my veins regularly throughout each day.

The day I was leaving I was waiting for my paperwork, for anyone who has not spent time in hospital (you lucky devils) you have to have all of your medications from pharmacy, two weeks worth to be exact, and paperwork for your GP to state why you have been in hospital, for how long and whether you are work-fit. Well, I was waiting for this paperwork, feeling relieved to be going home finally and very eager to get off the ward when a doctor I had never seen before suddenly appeared.

Dr Kaushall, Royal Preston Hospital, was an Endocrine doctor, specializing in the Endocrine System, which is the system that controls hormones. She told me that my Adrenal Gland was no longer working sufficiently and as a result I was no longer producing steroids or hormones, this is extremely dangerous as you need steroids in order to survive.

Your body produces a certain amount of steroids all the time but more so when you are under any physical or emotional stress. This is necessary to live, I had basically been a walking, ticking, time bomb, which was a terrifying thought. For the time being it overshadowed the news that I no longer produced hormones as I did not understand the significance of it at that point.

I had stopped having periods for some time, had been to the doctors and been told that it could be stress, medication, a whole number of things, of course I was worried, I wondered if perhaps I was going through the menopause or something. What was worse was that we had been trying for a baby using a donor, myself as the carrier.

For some reason it just was not taking, each month my heart would break all over again, I was desperate to carry a baby. Then the cruelest joke was played on me, we tried as normal, then I missed a period, little did I know that would be the start of 'no more periods' I thought it meant it had finally worked; we were going to be parents at long last! Even after we did a test and it was negative I still managed to convince myself, fool myself, into believing that I was pregnant; why else would I not have periods?

That had been when my Adrenal Gland had stopped working properly and I had been oblivious, the wicked thing about it was that I had thought I was finally pregnant when in fact it was my body giving up on that ever happening.

With mum, holding my baby cousin again

I now wear hormone patches and take a 'controlled daily dose' of steroids, I can live with that; being tied to taking pills and wearing patches for the rest of my life. It is far from ideal but I can handle it, I have been handling being a slave to medication for years but the fact that I will never feel my baby growing inside me, will never feel them kick, go for my first scan and wait with baited breath to hear their little heartbeat for the first time; that just about kills me.

"Facing it, always facing it. That's the way to get through, face it."

Joseph Conrad

I never imagined I would be one of the unlucky ones who this kind of thing happens to, but why not? I am already one of the unlucky ones who has what amounts to a disfigurement that made them a target for bullies growing up and continues to make them stand out now, I am already one of the unlucky ones who ends up extremely ill, I'm one of the unlucky ones who ends up in Intensive Care, I'm one of the unlucky ones who loses family members and friends too young, I'm now one of the unlucky ones who can't get pregnant. Why should I be surprised? Good things don't seem to happen for me, but bad things? They seem to be the 'norm'.

Holding my baby nephew; looking after him made me feel happy 

I look back over my life and I see so much heartbreak and a great deal of that is down to this illness, having a rare illness is soul destroying in so many ways, it creeps into so many aspects of my life and rips it to shreds. It is also something that I feel very alone with because when you tell someone you are poorly that you have MRS they have never heard of it, they don't automatically know what it entails so the natural understanding is just not there.

Before I got really bad, when I was able to work, I still had times that I struggled to get through the day because I felt so awful but if I told an employer I was having a flare up they were NOT understanding, even my colleagues seemed to think I was 'swinging the lead' there were never really any allowances made.

If you have an illness that is debilitating it is bad enough but if you have one that people are aware of and know of its severity they feel for you, they almost understand, even if it is not necessarily debilitating but they have suffered with it themselves then they know how bad it is first-hand but if you have something rare, that they have no knowledge of, then there is no understanding at all.

Having a rare illness is a very lonely thing, the symptoms are yours and yours alone, you can't say to someone that this happened or that happened and have them say that it has happened to them too, that they know how you feel.

Melkersson Rosenthal Syndrome continues to take from me on a daily basis, it got so much worse over the years until I didn't feel I had a life worth living anymore, I wanted to go to Dignitas in Switzerland and put an end to my suffering. Now though it is better then it was, it isn't perfect, far from it and some people might consider it a wreck of a life but compared to how it was when I considered Dignitas it is a lot better.

I still grieve for the children I will never carry, I still feel that MRS has taken far too much from me but I also feel that I have a life to live now, I have a partner who is prepared to carry our children, I have two nephews I adore, I am lucky enough to still have both my parents and to have a sister I am very close to. I have extended family and good friends, my life may not be perfect but it is still a life.

With my nephew; I never thought I'd be someone that can't have children

If I let myself think only about what I can not have, what I have lost, what the bad days are like then I am overwhelmed, a big dark cloud appears over me and sinks down lower and lower until I feel like I can't breathe, like I am suffocating under the pressure of it all and I can't see beyond it, I can't see any light at all, only darkness.

I have to enjoy the good moments because they can sometimes be so fleeting it's almost like they were never there at all, through the bad times I have to remind myself that they wont last forever and if I am lucky enough to get a good day then I make sure I LIVE it.

If and when I finally get to be a mum, it doesn't matter that they were not grown in my womb, they will be everything to me. They already are really, I love them so much and at the moment they are only a dream, an idea, a hope. I will never take them for granted or allow myself to feel that they are too much like hard work. I will know the moment that they are born, conceived even, that I have finally had some good luck, the BEST luck and that I have finally been blessed.

All these years of heartache and pain will be worth it; if at the end of it all I get to be a mum, if I finally, at long last get to hold my child in my arms.