Our Family

Our Family
Paul, Lara, Chantel, JD, Lou and Reece

Our Passions and likes

  • All of us love music of all kinds
  • Anti Whaling. We support "Sea Shepherd"
  • Camping
  • Chantel - Modeling
  • Chantel - Modified cars and attending events Modeling
  • Discovery Channel lol
  • FAMILY
  • Festivals
  • FRIENDSHIP
  • JD - Cycling
  • Lara - Making bead jewellery
  • Lara - Reading
  • Lou - The World Wide Web
  • LOVE
  • Motorbikes
  • Paul & JD - Cars - classic and modified
  • Paul - Making everyone laugh. lol
  • We love animals especially our 2 cats(Mulix & Charly) and 2 dogs(William & Blitz)

Tuesday, 24 August 2010

Frustration!

We had a cool night on saturday, I was hoping to take my son with us but he was other wise engaged. Not to worry tho there is always next time. I sat and enjoyed the music and watching Paul dance like a nutta for 3-4 hours non-stop. That man has stamina lol.we got home and went to bed for well no need to go into all the details but lets just say we didnt end up on a good note, My hip popped out of socket! badly, Its not good at all when 2 consenting adults cannot get "at it" without popping a socket.
I have tried to get around but this time its BAD, usually the hip that pops out the most is my right one, this time its my left hip.I did go and get X-rays a few weeks ago but like I said to my GP "I doubt it will show anything" but she sent me anyway and guess what.. nothing abnormal detected. ERM excuse me I told you that.. I need a scan not an xray.. but hey what do I know, its not like any of the GP's I have seen actually have read up on EDS or want to listen to me when I explain these things.My back is also really bad, it feels like I keep catching bone against bone and its so painful it makes me feel sick, I do have scoliosis so should go and get it looked at, but then I think well why Lara, the DR will tell me " Yes we know you have scoliosis there is nothing we can do" GRRRRRR SOMEBODY LISTEN TO ME!!!SOMEBODY HELP ME!!! I dont really have anyone to talk to about it which can be very hard. Paul is great but too protective and does not understand that YES I know I have to rest, but I dont want to do nothing for the rest of my life, I dont see much of my family but am around Pauls family alot.Pauls sister Elaine is about the only person who has taken the time to read up on EDS or who is interested in listening. Most of the others tell Paul to stop going on about it, or roll there eyes thinking "here we go again"(Thats where I get flashbacks of feeling like everyone is thinking "HYPOCONDRIACH") They dont understand that Paul has alot to deal with on a daily basis and this is not going away. at this point I am very low and feeling like I have knowhere to turn,
I hate being me, I hate my body, I hate the way I think and I HATE EDS.

Friday, 20 August 2010

Update. ETC

It has taken me a couple of days to get to my blog as I have had a couple of really "BAD" days with pain and dizziness. I even passed out yesterday and have been struggling to keep on my feet without falling. Its getting to me alot.

I went to my appointment with Prof G, I waited an hour and a half over my appointment time which is ok we didnt mind too much, but was in there for about 10 minutes, that has bothered me slightly as he also didnt lay a finger on me or even want to see the list of new problems I typed up, for the first time ever he made me uncomfortable..
I asked Paul what he thought and we have decided that it must have been at the end of Prof G's day and he had a really important "thing" to do!! lol.

The outcome this time is that I go back to the "Pain management" program at Stanmore Ortheopedic Hospital, Prof G say's that alot has changed there in the last couple of years since I was last there. Sounds great as I found it did help me when I attended last time.I just hate to be bored so I take so much stuff with me, My beads, art stuff etc etc . But its sooooo much easier to keep to the "plan" when I am there and without everyday life getting in the way.

I am still not happy about needing to use my wheelchair, but I suppose I am being vain and stubborn!! (For a change)It is now out of the cupboard and I am looking for some "Go faster" stripes lol.. am sure I will find a way of making it suit me.

We have also taken on another teenager. "AJ" she is a lovely girl all full of beans, and its her 17th Birthday tomorrow.We are going to take her to an open air party, I just hope I dont have to come home early, hence the wheelchair!

Anyway thats where we are right now! Short and sweet today. Especially after the last post. Keep well all and gentle hugs peace and love to you all.

Thursday, 12 August 2010

My "new" Symptoms for my appointment with Professor Graham on Tuesday.



At this point I have more to add, this is what has changed since my last appointment with Professor Graham at the UCLH (University College London Hospital)

1) When I was 19 I was an addict. I had an addiction to heroin. Yes the lowest of the low, I suppose it was my way of dealing with the lack of help or listening, and as I had pain all the time but no reasons why. I was a mess and felt so alone at that point. I was lucky enough to realise I needed help and quick! I managed to get into a rehab unit quite quickly. Some people have to wait months. I had a great drug councillor and she said, “If you don’t get help now you will be dead within 6 months!” Even that didn’t worry me enough. Its strange how an addict thinks!.
I went into rehab and my young son stayed with my Mum. The rules in the Rehab unit stated I would not be able to see my son for the first month! “A month!” That I could not handle. So I left after 3 days. Everyone was so disappointed with me especially my stepfather and it hurt, it hurt a lot. But I had to do it, I could not stay away from my boy! I went cold turkey. I have been clean from heroin since May 1996. My reason for telling you this is because I have issues asking for medications now, even though I know they will and do help.
It drives my fiancĂ© mad that I still have the paranoia of being an addict, but it still affects my everyday life 14 years later. I need to use Diazepam, but hate to ask for it. I don’t even want to ask them to update my dosage of Morphine patch even though at this point it would help immensely. All because I remember how I have been made to feel in regards to being ignored for years about my pain and that I was called a hypochondriac and because I am an addict. I have 1 diazepam left and have been away on a break and all I want to do is walk the dogs along the Sea front 1 more time before going home tomorrow, fingers crossed this last one works for me. But yes am too paranoid to ask for more (I know everyone thinks I am ridiculous!)
That was number 1 on my list to mention lol..I got a bit carried away.
2) My elbows were fine at last check but now my left elbow snaps and cracks and when it does OMG it hurts! Sometimes you can even see a movement in my arm due to the “crack”
3) My hips are extremely bad mainly my right, but I have figured out that after the swelling goes down I can “pop” my hip back in properly. (it does not completely dislocate only sublux) but now my left hip has started doing the same thing, I am yet to figure out the movement to “pop” it back in, When trying, it is immensely painful.
4) My middle finger on my right hand keeps popping and cracking is always painful and is a bit disfigured now.
5) Both thumbs throb. They hurt from my thumb joint to my wrist, a deep throbbing pain that is so frustrating and annoying. They are also constantly snapping which hurts a lot.
6) I have started to get small bruises on my legs, or that’s where I am noticing them. They are very weird. Some are little blue dots and some are proper brown/blue/green bruises, but no explanation on how they get there.
7) I am getting dizzy spells when I look up or lift my arms up, this does not happen all the time but it is certainly more common than before, sometimes my eyes go black and I wobble a bit more than before too.
8) My big toes! They pop out and they don’t go back in from anything from a day to a few weeks. All of a sudden they will just snap back and feel fine. Its ever so painful to walk on when not in properly
9) My back feels like I keep catching bone against bone. I have not yet managed to find the position that causes it as it is always different. But this is also ridiculously painful.
10) My calf muscles are very tight, and especially painful after sitting down. My right leg is definitely the worst. Even if I touch it in the right place it feels so bruised.
11) Back to my hips again. I have a new nerve pain, which has me doubled up and drop all of a sudden, I have been prescribed Gabbapentin which seems to be helping.
12) My shoulder is as bad as it always has been, I did have surgery on it approx 5 years ago but it feels just as it did before and I am still unsure how stable it is so try not to lift my arm away from my body too much. (before surgery I would move my arm away from my side and it would immediately drop out of socket)
13) For the last year I have had 4 nasty abscesses, They are Gross, painful and really ugly and always somewhere on my face. The worst being at Christmas last year behind my ear! Paul took photos and I keep trying to delete them lol, but he likes to record how bad they get.
14) I rarely sleep through the whole night (unless I have had a dinky poo) I am always tired. But when I do sleep through I have been known to sleep for 24hours!(but am usually exhausted beyond belief)
15) I would like for my Fiancé Paul to get some counciling as he is my carer, I cannot even begin to understand what he goes through watching me in pain and having to deal with so much, I would also like him to meet other carers of EDS/POTS sufferers.
16) I have behaviour issues with my son which are causing me a lot of depression and has made me quite ill. I am thinking of getting counciling to help my with the “tough love” approach which everyone I know has advised me to do for a long time, its just hard. I love my son. But hate how he can be sometimes. I am starting to be scared of him.

At this point I think this is all the “NEW” stuff I have to tell Prof Graham… I hope I don’t have to add much more.

I posted this and then edited!
I sometimes wonder if I should be so open about my addiction. and "yes" I think I should. My children all know and so do all my close friends and family. I decided when starting this blog that I should be as honest as I can be. So here it all is!! I was disgusted with myself for a long time. I have since been taught by Paul and close friends that although being a heroin addict is as bad as it can get, I would not be who I am today or know what I know if I did not live through this. I no longer feel dirty about it and have never hidden my addiction from anyone. To me I do feel it is something that I accomplished. And yes I am proud of me.

Saturday, 31 July 2010

Today.

Today is not a good day. Its now 14;30 on a saturday afternoon and I am still in bed. My back, my hips and my calves are throbbing/pulsating with pain, am just waiting for my shoulder to join in like my finger just has :o(.
I am also very moody and maybe a bit tearfull too. That could also be due to my little girl going away to the Grand Canaries for 2 weeks lol.. I told her I am physically able to bend myself enough to go in her suitcase, but NO she would not have it lol. She is now nearly 13 and I think I am the last person she would want tagging along with her and her friends,Its so surreal watching her grow into a young lady, moods changing taste in clothes etc.(Sometimes it is real hard work!)She even hates me on occasion now too. I remember that one with me and my poor Mum.

I had so many things planned to do today as my new rule is to achieve at least 1 thing a day (although I would secretly like to have achieved 100 things today!)
I have been "Spring Cleaing" I can be a bit of a hourder so am being very brutal. The less thngs I have the easier it will be to keep the place tidyer.. see there is a method to my madness I hear a tidy home means a tidy mind... oh dear he he my mind must be really messed up, lol not really, its not that bad lol.

Am hoping by the end of today I feel at least a bit happier but the thought of staying in bed all day does not sound too exciting does it.M\aybe I can get on with adjusting the new jewellery design I am working on. But first a little sleep I think.

I hope to start hearing from fellow EDS/POTs patients and their carers or families as I think its "Good to talk" anyhoo going to have some ZZZZzz's this has made me tired.

Friday, 30 July 2010

An honest Blog!!

So the last few weeks have been "not too good!"Pain has been really bad and been on my crutches for about a month, I will not use my wheel chair unless it looks funky at least, but I would rather not get it out from the cupboard at all. I have been getting Dizzy now when I put my arms up or sometimes if I look up slightly too much, So how have I dealt with it??? by moaning and feeling sorry for myself. I am probobly drinking too much too, at least I can sometimes blame my dizziness and wobbles on something else for a change!. But I have been there before. Once an addict always an addict.(maybe I will discuss that at a later date) And I feel with EDS, Chronic pain syndrome etc you are not really left with much of a choice what with being on so many types of medications.
On a good note I went to the Prodigy concert, Pendulum were there amongst other bloody awesome artists. I had a couple of real special friends there with me too, it reminded me of the good ole days, but at 1 point I did get upset when my friend asked someone to just note I was there and he replied " I didnt expect there to be an obsticle there" I dont suppose he meant to upset me , but it did and I teared up for a very brief minute...but NOOOO you will not get me down!! ignorance is bliss eh!
I had a great time with some great people. You know who you are guys. x thank you.
And thank you to my man Paul who has been exceptionally patient with my lately. I love you hun x

Friday, 23 July 2010

My hobby.


I have a couple of hobbies, I like to crochet but am not very good at it as I do not know how to cast off, so my blanket is getting rather large now lol, but I also like to make beaded jewellery. Recently I started using chain too, but still learning all the time. This week I decided to try and make a support for my knuckle using my beading and chain technique. It turned out quite pretty and even I was impressed, then Paul and I were having a silly moment and we were mucking about and I went to slap his hand mucking about (as I am not really a violent person lol) well I missed his hand and hit the cupboard. At this point we are not sure if my finger is dislocated/subluxated or broken!! as I am still learning how my body reacts I really have no idea what I have done lol, but anyway the point is now that I was hoping to show off my great design tomorrow at the Prodigy concert! but now it does not fit...aaarrghhhh!!! My finger is too swollen. So this is just a typical day in the life of EDS lol. Think it is my silliest injury to date...oh apart from when I dislocated my shoulder waving to the butcher a couple of years ago lmao!

Would love to hear about your silliest but annoying pops clicks and dislocations lol.

Saturday, 3 July 2010

RANDOM!!

Ok, So I am trying to have "more of a life"! Sounds Great. But you never know what could happen lol. Yesterday I decided we would borrow Paul's Dad's work Van take the dogs Amber, and one of Amber's friends to the Woods for the night and sleep in the van.(the random part lol) So after we pack my crutches enough bedding that I wont notice that I was sleeping on a "blow up bed" medication, etc etc etc we arrive at the woods when the weather man says "its going to rain" GREAT we thought but decided to stay anyway. We ended up having a great time really really enjoyed ourselves, the dogs were even quite well behaved. Toasted marshmallows too mmmm mmmm. And it DIDNT rain. So I said to Paul what a lovely time we had had and not too much pain or body trouble. Then on the way into Paul's Dad's house this morning "THUD" collapse! I am on the doorstep turning green. My hip had finally decided to "POP" back into place properly. OMG the pain this time made me feel so sick. Its not that popping back into socket is a bad thing but the pain is soooo intense.Hence I am now sat down with my leg up writing this because I am P....d off. Why can I not just have 1 just 1 day free of pain or popping, it puts a right downer on everything I try and do. In 2 weeks there is a great free event on that I really dont want to miss now I have this "I must do more" attitude. So whats the problem you say well I just found out to get to the event I will need to make my way accross fields and nature trails..
Erm Hmm. PIGGY BACK time I think lol. I just dont feel that life is fair. Yes I am in a bum mood but I want a life! thats how I feel right now.So there lol

Thursday, 17 June 2010

Not a happy Bunny!

Right now I have been in bed for the last 5 days and nights Sunday - Thursday so far. All because I wanted to go out to a festival! I thought I was being prepared and sensible, made sure I took my crutches etc so I didnt tire my legs to quick and once I arrived I pretty much sat down and just enjoyed the music, By the time I left though I had passed out in pain. NOT GOOD!I feel like its just not fair and no matter what I do I cant have a life...I know this is not true, and I understand that this is a "Bad Day" but like I said earlier pain plays with your mind and negativity seeps in sometimes..
I have symptoms in:-

 Skin
 Neck,
 Spine,
 Back,
 Shoulders,
 Elbow,
 Wrists,
 Hands,
 Fingers,
 Thumb,
 Hips,
 Pelvis,
 Legs,
 Knees,
 Ankles,
 Feet,
 Toes,

Most of my issues are-

 Tendonitis in one of my elbows
 Dislocation of my joints the worst are my shoulders, fingers, and toes.
 Subluxation of my joints ,meaning almost dislocating, but not completely the worse ones are hips, shoulder,thumb,toes and fingers
 Thin skin that scars easily
 Stretch marks (I hate them so much, makes me sad)
 Long healing times.
 Scoliosis in back / Curvature of the spine.
 Insomnia
 Decreased sexual drive/Increased sexual drive (due to combo of EDS, chronic pain, mania and depression from bipolar disorder)
 Personality disorder
 Irritability
 Being unreasonable
 Memory Loss
 Anxiety
 Fatigue
 Bruxism (grinding of teeth, especially at night),
 Joint dislocation during sleep
 Carpel tunnel
 Knee: recurrent patellar dislocation (knee-cap dislocating)
 Weak ankles, dislocate sometimes, pop/click always, pain after standing/walking, I roll on them regularly,
 Feet (roll inwards naturally)
 Pain in most of my muscles due to joint stiffness.
 Muscle Spasms
 Tachycardia (crazy heart palpitations)
 Orthostatic hypertension (blood pressure lowers when changing positions, moving)
 Dizziness / Passing out
 Severe headaches
 Migraines (with nausea, vomiting, blurred vision, spotty vision, pain),
 Astigmatism (slight)in both eyes, need glasses for reading, computers, dimly lit rooms, Cinema, etc.
 Gum disease
 Mild asthma
 IBS and other gastrointestinal problems
 Occasional kidney infection
 Everything scars
 Definitely have issues with the sleep.
 Mood
 Energy cycle
 Mania (extreme enthusiasm, energy, passion, easily distracted, irritable, mean)
 Depression (no motivation, sleep too much, withdrawn, sadness, despair)
 Suicidal thoughts (at worst times)
 Nightmares
 Night-sweats

The frustrating part of all this is that I was once a promising Gymnast and enjoyed sports acrobatics I competed for England my County and others and gained awards and medals for my achievements. (My mind says "Now look at me" and I get sad again)I quit Gymnastics at 13 after 10 years of having my "backside in the air" lol as my mum said, due to my back giving out( Mum thinking I had ripped yet another School skirt when she heard the RIIIIPPPP>, but no. It was my back that time. I was a flexible thing growing up so we thought it would pass and all the weird pains I felt were just injuries or muscle strains. I got so many of them while training it was hard to believe I was REALLY hurting that much, I was always so strong.

I think Mum just thought I liked to wear bandages. I even hid them in my bag so I didn’t have to explain myself to Mum when I was in pain I would leave the house get around the corner and bandage my limbs when needed on the way to school, She thought I was a Hypochondriac. In the end so did I. Sometimes Paul and I argue now because I get angry and say that it is all in my head. I know it is not! We both do. In these blogs I hope you get some kind of understanding. It’s not easy to explain how you can go to sleep feeling one kind of pain but wake up feeling another, but always having pain has its effects on your mind, it gets you down and frustrated.

Saturday, 29 May 2010

An Intro to the mad house and its inhabitents lol..

An Intro to the mad house and its inhabitants lol..

We were inspired to start our blog as Lara came across this site by chance researching her conditions. We have never used a website like this so will be learning as we go (please bare with us any help or advice would be more than welcomed)
For our first we just wanted to introduce ourselves.
OK-
PAUL-
Paul is Step-Dad/Carer and the light of the Family always trying to lift the spirits of everyone and thrives on making people laugh, Even when he is struggling with emotions himself. We sometimes get our friends visiting, just because they need cheering up Paul style lol.
Paul comes from a Old school family as in lots of them and very close. He has 4 siblings 2 Brothers Roy(Older) and Oliver(Younger) and 2 Older Sisters Elaine and Lesly...Sooo many Nieces and Nephews, Cousins, Aunts, Uncles even Great Nieces and Nephews lol.... and no Paul is not ancient, not a fossil.. lol that can be proved by us all begging him to chill out in the evening when he is on one singing, or dancing, or shouting or just being a nut job lol...we wouldn’t really have him any other way. Although he does the mobile mile! Which is...as soon as he answer his phones or he calls someone , that’s it he is off... round in circles or all through the house open the door and the garden gate and he is off lmao.
LARA-
I am a fair bit younger than Paul but we match perfectly. Because Paul never grows up. I am a bit of a hippy, loving the colour purple. Even my hair is Purple right now. I have 2 biological children Jak and Amber from a previous partner.. and have been lucky as to of not only had my biological parents to live with I had an awesome foster family who I am extremely close to and love dearly as much as my own. I have a condition called EHLERS-DANLOS SYNDROME which is a form of HYPERMOBILITY
I also have POSTURAL TACHYCARDIA SYNDROME, CHRONIC PAIN SYNDROME, PERSONALITY DISORDER & DEPRESSION I also have more going on that we have not yet been able to get to the bottom of.

There are also a couple of other people who are very close to us and we consider major parts of our family, who are Reece, he is Pauls step son from a previous relationship and lived with us for a while they have a very special bond and is lovely to see how close they are Reece is nearly 14 and was with Paul from about 6 months old. Reece has a brother Luke and Sister Candice who are turning into pretty awesome people.
Then there is Chantel. We consider her a daughter and dear friend.she also spent some time living with us and we miss her dearly now she is getting so independant. She is beautifull inside and out and we love her being a part of our little family.
I love our little bunch the family we made, biological or not it works for us.

I enjoy making beaded jewellery and always looking out for funky bead’s lol. I try and get to as many festivals as I can in the summer but usually the free ones now as the rest are sooo expensive!

Paul and I got together on the 12th June 2004 and were engaged Christmas day 2006, I still think we have a unique relationship I am so in love, and still in our honeymoon period after nearly 7 years no itch here lol. When we do finally take the plunge and get married my married name will be Lara Croft lol..no joke.
I am very lucky Paul has an awesome family and a huge family.I love them all and I fit!

In regards to Chantel, Jak, Amber-Louise, Reece and our families I leave it to them to put their feelings into this when and if they are ready. To all of our friends and family THANK YOU for your support and understanding on why we choose to do this. And to all of our new friends welcome and I hope we learn from you as much as you can learn from us.