3 month whirlwind

I quit steroids 3 months on friday, so now i am technically 3 months and 2 days in. woo! To be honest i never though i would get here, and my skin looks good, if not a tad red. I am healing. I also received my genetic results back, and they were a little surprising (I will go into that later).

I just wanted to apologise for the last post.

The last week and a half, as been hell. I woke up on monday with my eyes and ears, oozing a weird substance. That pretty much was my breaking point, physically and mentally. I think half of it was down to a cold, the other half down to tsw. I went to the dr and cried. She wasn’t my normal dr, and she did not know what to do. She asked me if i would be willing to go to the hospital derm, i said not really. She then gave me the number to a private dermatologist, and said i should think about Immune-suppresants. To be honest, Immune suppressants scare the hell out of me. They are for transplant patient. I don’t feel i’m at that point yet. She signed me off for the week.

Out of desperation i went to an alternative practitioner. The brainfog was awful, i couldn’t think straight and i just couldn’t cope. He said i had ‘candida’ and put me on a range of herbal supplements and vitamin supplements. Which helped.

I then saw my regular dr on Thursday, and i was signed off until the following Thursday. He increased my antihistamines dosage. I felt better, but then i still had a problem with my mental clarity, headaches, tiredness etc.

I the received my DNA test they said:

Screen Shot 2015-02-22 at 17.10.47 Screen Shot 2015-02-22 at 17.10.35

Now I’m not going to lie my knowledge in genetics isn’t that great.

I have 12 mutations (heterozygous, which i presume means that they need to be ‘switched on’ by environmental factors, and 2 homozyogus (which i presume are already ‘switched on:

This Detoxification anomaly, to my understanding, describes the brain fog, headaches etc. As  i can’t detox certain chemicals. I think.

CBS- A/A (meant to be G) – Add l-serine to homocysteine to produce l-cystathionine – High ammonia, high taurine etc

Now this one made me laugh.

GSTP1 – A/A (meant to be G) – Conjugation toxins to glutathione – People with AA show increase inflammation upon supplementing VITAMIN E.

So basically, i’m allergic to vitamin E…..

The rest of the mutations were quite scary, and if ‘switched on’ can mean, i will have trouble carrying a baby to full term. I also have the MTHR gene mutation, which is related to eczema. I also have neurotransmitter mutations which could mean my body doesn’t uptake dopamine and serotonin that well. Another mutation causes asthma and IBS, and frankly the list goes on.

I’m trying to just focus on the homozygous 2, as these will more likely be the root of my problem.

I took this to another new dr, and he didn’t quite get it, and talked about self-fulfilling phrophecy. I understand that epi-genetics is a pretty new field. I did the genetics test as i wanted answers, and in a way, i have them. My body attacks vitamin E, which makes my skin go crazy, my body can’t process lipids, my skin doesn’t replace it, as it should etc etc. It’s a bit overwhelming. I’m just sick of sleeping my life away. I hate having brain fog, which means i can’t think straight, (i couldnt tell you what 2+2 was). Apparently i need to do something about a Methyl pathway, but i don’t know. Right now, I’m taking it all step by step. I have no choice but to continue. At the end of the day we all have mutations. I’m just thankful that i don’t have a gene for something more serious.

What i also realised this week, was how amazing my support system is. I am truly lucky to have amazing friends and family :).

I guess sometimes you’ve got to count your blessings.

I’ve been down in the dumps lately, focused on my skin, and i forgot to have fun. I have ordered supplements, and if they don’t work, i will go back to my gp as soon as i can (who is on sick leave for a bit). At the end of the day, i am doing the best i can, and i am doing all i can. The sun will come out of the clouds

Love

Claire

Advertisements

Rock Bottom

This week (and its only Wednesday) has been absolute hell and i’m only 2 months and 3 weeks into steroid withdrawal.

Monday, i woke up with a pussy fluid coming out of my eyes and ears. That was it. I broke. I went to the dr (not my normal dr i may add) and she said that they weren’t meeting my needs. She recommended that i go and see a private dermatologist who could prescribe me an immune suppressant. I’m sorry but you know when shit gets real is when you to go to a dr who wants to prescribe you ‘immune suppressants’. I feel that i would be in a worst position then i am, if i take them. The fatigue, brain fog and general groggy feeling will get worse.

So today, i went to an alternative health person. He took my a sample of my blood and put it under the microscope. It was full of fungus, deformed red blood cells, a lack of haemoglobin and clustered cells. So after i beat Candida, thanks to 3 infections and 3 loads of antibiotics, i have it again, but this time in my blood, not in my digestive system. Yay.

I literally can not take anymore. This isn’t a life. Everyday is about getting through the day. So far this week all i’ve done is sleep. I don’t feel depressed, just apathetic. Literally if this state of ‘brain fog’ carries on, i will take an overdose. I am desperate. I can’t think straight. I’m literally fed up of everything. I wrote this to the TSw group last night:

Sorry I need to rant. Feel free to bypass it

I can’t cope anymore. Tonight my friend chopped a good 4 inches off my hair because I couldn’t wear it down anymore. I am so thankful that I still have my hair.
But what did we all do to deserve this hell?
I’ve always followed rules, respected my elders and refused to step out of line. Where has that got me? 6 years of anti depressants, unemployment, a current poorly paid job (I’ve taken too many sick days off so it’s unlikely someone else will hire me)
I’m 25 and what do I have to show for it? A degree and a possible postgraduate diploma. Big woop.
Whilst most of my friends are enjoying their lives, buying houses, getting married etc I’ve never really had a life. Even at uni I used to hide myself away, not letting myself enjoy anything. If it’s not my skin, it’s candida, if it’s not candida it’s my depression. What the hell. I went to a new gp yesterday and she said that the system is not meeting my needs and that I should consider seeing a private derm, who may let me have immune suppressants.
I’m sorry this is getting ridiculous. I’m fed up of having baths everyday. I’m fed up of being ill. I’m fed up of not sleeping. I’m fed up of the burning. I’m fed up of the pain. I’m fed up of the itchiness. I’m fed up of not living anymore. I’m fed up of the ooze. I’m fed up of the smell. I’m fed up of the flakes. I’m fed up of the baggy clothes. Im fed up of everything. My goals are to just get through the day.
I have no idea what I did to deserve this shit, I’ve always tried to be the best person I can. I will help anyone. I’m sorry but we don’t deserve any of this. It’s not fair
I know people are worse off then me, I’m just feeling sorry for myself to

I know that people are worse off then me, but right now, i feel as though there is no hope. I can’t keep living like this, or not living. I pray that these supplements work. Right now, i have nothing to lose.

The weird thing is, i’m not tearful thinking about dying, or writing suicide notes. I’m very apathetic about it. I would write one for everyone, who is closest to me. I wouldn’t want people to be sad, as i would be in a better place. Everything is a fight, and i don’t know how much fight i have left. Literally it’s one thing after another. It never stops.

But i don’t feel as though my time is up yet. I feel like i have got more to achieve and to live for. I feel as though i’m hanging on by a thread. Just surviving. I pray those supplements work.

Love Claire

xxxxxxxx

Roll with it

I have a confession (AGAIN! –  WHEN WILL THIS GIRL STOP)

My Road Rage has taken a turn for the worse. Just this week on my morning journey to work i have called other drivers, motorcyclists and cyclists:

A Cuba

An absolute fiddling Cuba

CUBA CUBA CUBA CUBA

To suck my duck

To suck my duck No wait go suck my violin as violins take a pounding…..

a apple hole….

a duckhead

I also sang ‘Your a cuba’ to the Muppet theme tune……

It’s on a cd in my car…..

(Thanks iPhone auto correct for changing my swear words in texts…so i wouldnt swear without reason…..)

I said these….and worse…in my car. Alone. With the windows firmly shut. What I’m getting at is that i wouldn’t tell them that they were an idiot cuba of a driver if they were sitting in front of me. I also wouldn’t sing ‘pocketful of sunshine’ at the top of my voice either….

I had my appraisal this week at work. I couldn’t say a lot of things that i wanted to. I didn’t tell her that i was sick of it. I didn’t tell her that i deserved a pay rise, amongst any things? But why? Well frankly i don’t have the balls. On my own, i believe my opinion is worth something, but in front of others, they are always right. Why are others always better than me? Why are others always right?

Since I’ve moved back in with my mum, i seem to have lost something. my self-esteem. After coming back home from uni, or London, a holiday etc i revert back into a helpless child, who needs mothering. The job that i’m in is very Matriachal, and i see the owner as an elder that should be respected, but shouldn’t i? I need to drop this whole helpless thing.

Every few months, i almost lose myself. I forget what is important. This time was no different. I began to panic about where i was going with my life, i still am. I will be a child therapist, just not yet. I miss being creative. I miss saying what i think, i miss education, i miss reading. I miss what makes me.

So you know what?

I am going to buy a muppet

http://www.fao.com/whatnots/builder.jsp

And you know what else? The muppet will be a part of my therapy practice.

So here’s to not knowing, and seeing what happens.

Love

Claire

xxxxxxxxxx

When the sun hides behind the clouds

So…..I’m 2 months 2 weeks into Steroid Withdrawal and i have developed the infamous ‘Red Sleeve’

My shoulders, seem to be getting better, i still can only wear baggy tops, but hey, at least i can wear tops! At the minute my arms and neck are probably the most painful. When i move, it feels like i’m tearing skin, even though the surface looks fine. I feel like my body is forcing the top layer of skin off. Whenever i move my shoulders, it feels similar. My face is now going through ‘burning phases. One minute it’s hot and burning, the next it’s not. My legs? well they are pretty much just chilling! I get the odd spot or to, but nothing compared to the oozy spots on my arms. My hands are pretty red and sore but okay. Believe it or not, i feel as though they are better than they were on steroids.

I’m not going to lie, these 2 months, i have had to get used to a lot. I’ve gotten used to the no shower thing, i’ve gotten used to the daily (sometimes twice daily) baths, the washing of my hair with a shower attachment, the loss of eyebrows, the insomnia and the constant intense itch. Another symptom is lack of energy. I had a very minor staph infection on my face, so i’m just finishing the antibiotics, maybe that’s the reason? To be honest, it could be so much worse. Right now, even though it sucks, i can deal with it. On some days i can fill my eyebrows in with an eyebrow pencil, and wear a teeny bit of mascara. I try and ignore the flakes in my hair and face.

Well if you’re not sad about your skin, what do you have to be depressed about?

Today has been awful. To be honest, i just want to cry. I had my work appraisal, and it was okay…not fantastic but okay. They said something that struck me. ‘We feel like your in the right place, to develop at this time’. hmmmmmm………To be honest 3 years after my BA, i never dreamed i would still be working in a nursery. Some days i am bored, and this is not what i have trained and worked for. She also said that she now considers me a Level 3. Yay……..So my BA degree and PGDip mean nothing….guess not.

I’m being melodramatic, but i feel lost. I want to go into counselling, but i need to get better. It feels like taking a year out, is giving up. I don’t want to give up. I feel like i can do more with my life. So why don’t i leave? It’s a mothering environment. Instead of being bitchy, it can be a very containing enviroment. I feel secure, like i’m being looked after. I’m being mothered. I wanted to say things to my manager today, but i didn’t, i defended myself a little, and let a few comments slide but why? I was told never to answer back to your parents. I don’t feel equal. I very much feel like a teenager, at university, whose lecture’s contain them. Right now i don’t have the confidence to say ‘i can do this’ or ‘no, that’s not right’ and hell, i want to, i just can’t. I don’t know why. Right now, i’m in a kind of helpless mentality. Even though nothing in my life is wrong, i’m unhappy. My manager said ‘we just want you to be happy, and enjoy being with the children’. Well i do. Until today, i did.

Even though i’m 25, i don’t feel like an adult. I feel at time like i am 18, and seem to revert to this helpless age. I’m 25, i should be more confident, happy and have a higher self-esteem. I’m sick of talking about confidence. Some days i have a voice, others i don’t. Today i don’t. I feel like i have a void. Even though my friends and family are pretty amazing, it’s still their. The only thing that filled it was studying.

It probably sounds stupid, but i feel there are signs telling me to stay at my current job. Just like the one above. But i also want to move on with my life. But i am scared. I am scared that i will move somewhere that i hate. I’m scared that i will be put in the same situation as i put myself in last time. I don’t want to go through that again.

I’ve applied to teach at a local college, i won’t get it, i don’t have the teaching qualifications. But i just want something to fill this hole.

OMG this post is turning so melodramatic!

Seriously though, i hope this is just symptom of TSW.
Love

Claire

xxxxxxxxxxx

Ps still fixing my iCloud. I will put photos of my skin up soon!