Okay, so it's been a while again. I'll move on quickly.

I saw a health trainer today through the local national health. I'm desperate to lose weight, as I keep being reminded that if i lost some weight my joints would feel better. So in a last ditch effort, i have consulted a professional in the way of the health trainer. Really nice lady and she will help me keep my head on the goal! Although she says that I know everything, it's just a case of getting my head in the right direction. I tried to explain what use hypermobile people / arthritis suffers have to go through. I'm extremely conscience of exercising but not over doing it, as i always find that you have a good week, over do it and then end up in bed with bad knees/feet and or hips! I've got to work on doing one form of exercise a week, my chosen exercise is swimming. None impact and fairly easy going, and another big bonus is I won't knock myself out with my massive boobs! :-)

We had a bad week last week. All good up till Wednesday when Jim got a stomach bug, and I pulled my tendon getting down on the floor! So while May was crying on the floor, Jim sitting on the toilet and me unable to move from the chair, we had a fab week! Jim's idea was to stick a bucket to his bottom. LOL. Makes me laugh thinking about it.

We had a long weekend away with my family. Has anyone seen brothers & sisters? Well, we are exactly like that, just British version! It didn't start very well, in fact as in true walker style, it started with a huge argument. And yes I started it with my very stubborn mother who was all stressed out for absolute no reason except for not taking her sanity pills, and then trying to tell a women not on her sanity pill that she needs them is a whole other ball game!

Does anyone else suffer with knackered ness??

Ha Ha Ha....I know! I need to PACE! I'm trying to fix the word in my brain. It doesn't seem to like the word too much.

I've decided I know what my problem is....I'm a control freak! I get lost when I can't control my own body. I very bad trait that I need to sort out.

Jim and a few others went to watch the football at Anfield this weekend, so I went with my sis and mum to go shopping. Never been to Liverpool before, I was really surprised! It was a lovely day, and Albert Docks were fab! We took it really slowly, and kept stopping for Coffee (one of the bonuses for being disabled!).

Jim was happy...I didn't spend much and Liverpool won!

I keep promising to update more regularly, but not today as I keep letting you all down! So until next time....Adios!

x

Really sorry again!

I can't believe how busy i have been....how typical. I thought that starting this blog would keep me busy and help me keep my head sorted because I was bored. Ever since I have been busy.

That is so typical, it always happens that way....the same as when you want to get somewhere but get caught behind a learner driver, and all the lights turn red on you!

I've been ranting lately about my condition, it's got right on my nervous. I went for a walk around Swinsty Reservoir in Yorkshire this weekend, but half way round, my hips went! So Sunday and today I've been stuck in. Typical again....feel really good...go for a walk....bad pain....stuck in for days! Jim has been yet again very helpful, fetching carrying, baby duties etc. He's turned into a very good housewife.

My younger sister, is being referred to a rheumatologist as she has had terrible problems with her knees and wrists. They have already diagnosed her with HMS, but think there is something more going on. She's waiting on results!

I have had a quandary lately.....To scooter or not to scooter? Because of the above problem, I'm thinking about a mobility scooter. I just have major issue's with the way people treat you, and also the fact that the scooters themselves are aimed at the over 60's not people in their 20's. If I do get one...I want a trendy one not one that makes me look 65 and need a blanket over my knee to keep me warm!

If anyone has any suggestions, please let me know!

Take care for now! x

Hi All,

Well Thank you for all your support and for taking the time out to log on and check out my new ramblings.

It's seems to off been a busy week so far, and with the weather so nice, I've been out and about with May. Finally been able to sort out the garden! It was in such a state. It now looks like a garden. May has not been well either, teething still!

I went to see my Rheumy yesterday, who has finally put me on a treatment course. They have given me Methotrexate and a dose of folic acid for after! I was originally going straight to my job from the hospital but because of the new treatment, I was required to have blood tests, X-rays of my hands, feet and chest and then get my prescription from the hospital pharmacy. What a joke! blood test queue was not too bad, so that was quick however, when I got to the x-ray department they advised that I could be waiting 2-3 hours! All I can say is thank goodness for my DS LITE. Then I went to the pharmacy and got chatted up by a really old guy who stood extremely close to me and then promptly started to tell me how although he's old and has 4 kids, he still enjoys the practice of making babies! YUCK! It really made me smile although I really was not in the mood for old dirty men, I did have to smile at his odd sense of humour.

So, I've taken my new tablet and am turning slightly paranoid about side effects, I'm sat here waiting for something I expect to feel like a brick (again..over imagination running wild!). Nothing so far.

Hopefully this beautiful weather will last a little bit more, if it does I will go quiet again as I will be out playing! If I'm on here more, then it's because a)I'm ill and bored b)Weather is naff, bored and May in bed!

Bye for now!

Day - I can't remember!

Hi all,

Again.....it's been a while since I've written anything!

Computer problems plus getting a new part time job has taken time away from me.
Yes...I have a small temping job, 10 hours a week. It's very interesting and it's keeping my mind occupied, I have to try and learn Access!

I have my rheumy appointment on Tuesday coming so I am looking forward to telling her all my troubles and she giving me a new magic pill that's going to make everything better! (I wish anyway!) The doctor has given me some cream which is actually helping....it capsicum. I find that really helps when my joints are sore, especially my small joints.

May is nearly walking, she's getting so determined. She's very strong willed, just like her father!

I will update more later...I just wanted to let you know that I've not forgotten about you!

x

Day Six

Yahoo!!!! I've straigthened my hair today for the first time in 6 days!

Oh, what a difference a day makes!

As you can probably tell, i feel a whole lot better today. I've been making dinner, cleaning and playing with May. I feel so much better for getting my kitchen back from Jim unorganised mess. He has no clue how my kitchen runs. I'm in charge now and it's back to normal business. Yahoo!

(I've still got to be careful but hopefully getting back to normal!)

I saw mum today since our argument on Friday, everything seemed okay but I'll give her a hug tomorrow and ask if she's actually read this blog yet. Knowing my mother she most likely hasn't worked out how to click the link I sent to her email. (Hi Mum...when you do read this!)

Oh my life....I'm just watching a cop show....Three girls fighting! It's disgusting...how do women behave so badly? It give us women such a bad name. Lock them up and through away the key I say.

I'm shattered now so I'm going to bed. Night.

Day Five

Sorry I haven't updated since thursday. I had a really bad day yesterday. I had a huge argument with my mum, which just made me so upset tand the rest of the day was just shocking.

I didn't get up yesterday morning, i just felt so exhausted. I needed to have my hair straightened but needed someone to do it for me. Mum was going to do it, but when she came around, I was in a foul mood. Very frustrated and not in the mood for feeling ill again. She told me to stop stropping or she would go home, so i told her to go home! She did and we didn't talk all day. I went back to bed a cried all morning. I felt so angry, upset and mad that I had got myself into such a state.
Although trying to explain how you feel to a none pain ill person is like trying to explain sea sickness to someone who has never been on a boat! Making myself clear is the hardest thing for me, especially to my family. I always do it in a backwards horrible way, usually ending in an argument.

Anyway, I apologised for my shocking behaviour and now all is well on the family front.

I've decided that my next challenge is how to cope on my own with May. It's not so bad at home because she's very indepentant, but getting to and from the car is a nightmare. Lifting in and out, bags and the kitchen sink. I don't want to wish her age away, but I can't wait till I can say to her 'May, get in the car!'.

Today has been a better day, i've actually been out this morning! First time in 5 days. Hopefully on the right track. I've got things planned this week, like housework and dentist on Tuesday! I've just got to remember not to do too much or i'll over do it again and be back to squre one.

I can't believe it is saturday already, where does time go?

p.s I don't have spell check on my mac so i am sorry!

Again, not a good day! Really painful hands today so won't be able to type for long. I realised that may last few blogs have been very whiny. So I'm sorry, it's not the intention to be sad and morbid. I want my blogs to be insightful and humorous, not sad and depressing. I will try to improve on this. And if all else fails I will just post a funny picture or something!

We had a leak in the bathroom this morning....I decided after 3 days of being in bed to have a nice hot deep bath. Jim has to help me in and out, so while i was soaking, May was running up and down the hall way in her walker and Jim is talking to me sat on the bath. The bath was very full and started to run down the overflow. Jim said that it didn't sound right, it sounded like it was leaking. I told him to stop being so silly, what on earth does a leak sound like??? 15 mins later after he washed my hair for me, he went sown to the kitchen directly below the bathroom. The floor was an inch under water! Oops. He was right, it had leaked! I felt so bad, but never mind, it got fixed and all was better.

I still have to teach him how to use the straighteners!

That's me done for today. Hopefully tomorrow is better.

Day Three

I was thinking about what I said yesterday, I don't think people understand exactly what our invisible illnesses really do to us.
I've spent the last few years trying to hide my illness in fear that people will not believe what I have. When I have been asked how I am, I just say 'I'm fine' when really I am not. I think this has been because I have some fear for what people think and want to be accepted. Being different is very hard and is hard to come to terms with.

Today, I have been poorly again. I have shocking shooting pains in my arms and wrists, not to mention the back ache. I am currently sat on a heat pad in an attempt to sooth the pain, is it working - No, but my butt is nice and warm! The only time i feel like that now is when I've had a good dose of steroids! LOL. I'm currently taking codeine (note to others - be careful, it bungs you up to no end. I felt like I was giving birth again! sorry for the detail but feel it important to warn other!) as well as another 20 tablets a day. Problem is half of them you need to take with food so I end up eating all day long just so I can take my tablets.

May has gone to her grandmother's again. Yesterday grandma noticed a tooth coming through, finally she is getting some teeth! She has been teething since she was three months old. Again I can't stop feeling bad that I can't look after her. I worry that May is unhappy. Me being paranoid again.

I also feel depressed, seeing the same four walls for a week is horrible. I just want to go back 10 years when I felt normal. I always imagine walking on a beautiful spring day, sun shining with not a care in the world. Was the world really like that when i was a child or was it that I lived in lar lar land. I think maybe the later, my mum and dad obviously did a good job.

Jim is out at work and I have to try to arrange to get to the bank, another job I hate. Standing in a queue waiting for Mr money man at the front of the queue who seems to think he has all the time in the world and so has everyone else behind him. Wanting to scream because of the pain, we stand patiently waiting to take our turn! What is with this country and queue's???
My mum is picking me up when she finishes work at 2pm so that we can go get May and bring her home!

I've got to go make myself presentable to the world now, so that I don't scare anyone! This takes a while. I may update later, I'll see how I feel! Bye for now!

Day Two

Good Afternoon all.

Well another day of not doing very much. May has yet again had to go to Grandma's to be looked after. I really hate having to rely on others to do what I should be able to do. I am mummy and I want to be able to do things for myself and May. It makes me feel like a bad mum, and that I'm losing the bond between me and her. Life is so unfair!

So what do us 'invisible' do all day? On a bad day I sit and do nothing, and on a good day I 'over do it' and fit in as much as I can. Why do we do that to ourselves? I often wonder to myself if my illness is 'in my head' and that I'm just a paranoid freak but then on days like today when I'm in agony, i know it's there. I watched Jeremy Kyle this morning (rare because i really hate the programme!) but anyway, he was talking to people who have deformities and how people treat them. It was shocking to hear what some people have to go through. How people stare and make comments. It occurred to me that unless you are 'normal', people don't accept you either way. I've been in situations when wearing my hand braces that people look at you daft, and I feel that people to stare and make comments behind your back. It's a horrible feeling! Bringing on another point.....

We shouldn't have to spend our time trying to convince other people we are ill. I think we live in a society when no one trusts anyone anymore. An example of this is the benefits system, it's so darn hard. The forms for anything are so difficult and generic that it's impossible to fill it out. I've just received confirmation of my DLA. I now receive middle rate care and high rate mobility. I was awarded it original in 2006. In November 2008, it was due for renewal. Simple thinking me thought that this would be an easy process.....oh how wrong I was. I completed the form with the help of my husband, sent it off...to be told that I would not be award anything because I no longer qualify! I asked them how that can be if my condition hasn't changed? (confirmed also by my GP!) They couldn't give me an answer. Fortunately, I have a very understanding doctor who wrote them a fantastic letter on my behalf. This worked and eventually was awarded dla till 2011. What a flippin hastle? I understand that they have to be careful and that people in general do take the mick out of the system, but they seem to tar everyone with the same brush. Is it just me who things the system doesn't work?

Okay rant over! Seriously though...where did it all go wrong?

My plans for the rest of the day.....to sit and watch what I've taped in Sky plus (If you haven't got it yet...get it! It's fantastic!) Brothers and Sisters I think this afternoon. It makes me laugh...I'm from a fairly large family so I seem to relate a lot to what goes on. I have 2 sisters, one older and one younger. I am the middle who yes...suffered from middle sister syndrome! I also have an older brother, the oldest of all of use. We are all married...Younger sis, Suzanne 22, lives in Scotland, married to John and have one child, Zac 3. Delicia, 30, lives next door to me with Stu and have no children. My brother who lives in Birmingham, Will 34, married to Debbie and have 4 little rat bags.

My Mum,54, who also lives next door with my sister and bro in law, is my best mate. We never use to get on but that's a whole other story. I lost my Dad to cancer in 2004. Again, i will talk about that another time when my joints are not so sore!

Well..that's introduced my family/support system. I will talk about them a lot and will try to give you more details about them as I go along.

Just to confirm that I have no plan for this blog so if you have any questions, please feel free! Any any suggestions would also be gratefully received.

Also, can anyone help on how to use this blog site? I don't know how to search for other bloggers that have the same interests as me. HELP??

Well....just come back from the doctors! He's given me a cream to rub into my joints and a muscle relaxant. Can't remember the name but will add them when my hubby, Jim brings them home from the chemist.

Speaking of which, my Jim is fantastic, he puts up a lot with me. Although he has told me he's going to take me to the knackers yard! I don't think when we got married 7 years ago that we would end up like this. Poor thing, he doesn't even get his special 'promise' as I'm either too sore or just plain shattered. At least we can laugh about it.

Now I've updated you all on the doc's situation, I'm going to rest but will be back tomorrow!

Day One

My first blog....

Well I've been in bed all morning and bored stiff. My poor baby is being looked after by her grandparents. I just worry what she things mommy is still doing in bed.....she must think I'm mad. My baby, May is 9 months old. She beautiful and is the best baby in the world.
She sleeps all night and has two naps in the day. She's very clever and keeps me entertained.

My shoulders have been sore now for over a week, and now my whole arms are painful. They feel like they are hanging off and someone is trampling all over them. I find it hard to explain the pain to someone who doesn't understand. So, unless I'm talking to someone who doesn't understand, i don't talk about it. If someone asks me how I am, i just answer with the usual 'yeah...I'm fine!' On the other hand you don't want to whinge to people about how you feel because then you become the person no-one wants to talk to because all she does is moan.

So, sorry people...THIS IS MY LET OUT!

I call my Rheumy on Friday who has now advised me that i need another steroid injection. Another one that is going to make me gain weight. This is the same Rheumy that told me three months ago that if i lost weight I would feel better! How stupid....believe me if I could I would. I'm not a bad eater, I love cooking when I can lift a pan. Without exercising though, eating lettuce seems none void. I would rather be fat and able to pick up May than being in bed unable to get out.

Right....I have to go for now as I have to prepare for seeing the doctor.