One womens story against an a invisable illness

One womens story against an a invisable illness

Sunday 31 October 2010

Tooting and Mitcham football ground have a lot to answer for!

Hey everyone,

Yesterday my son's had a joint birthday party at The Hub in Tooting and Mitcham football club grounds and I'm not impressed about the service they provided or the lack of it!

I phoned Tooting and Mitcham grounds to see if they did parties there and the receptionist didn't seem to know what she was doing and after waiting for what seemed like a decade! She answered they did. She told me that it was £12.50 a child and the party would consist of an hour play with a professional coach in an all weather pitch then 45 minutes in a party room. Me and my husband considered it and decided we would go for it.

We went to the grounds to book the party and to pay, when we got there the receptionist was so unprofessional, She didn't even know what she was doing most of the time and everything we asked was an inconvenience to her. On the form we had to fill out, it asked if any of the children coming had special needs, my nephew has cerebral palsy so I informed them of this. It also asked if we wanted a hot buffet or cold, there was no information on what the food would be other then it was cold or hot! I filled out the form and returned it to the receptionist, she looked briefly at the form and said that we could have the minimum of 10 children and that we could have the maximum of 20 children. 10 children equaled £125! We paid in full for 10 children and were told if anymore children came on the day we could pay for them then.

I asked the receptionist if I could see the party room, eventually she found a young girl to show us the room. She took us upstairs to see the room which was underneath a soft play apparatus, I asked if they were allowed to go in to it and she said that they weren't and they was only to stay in the play room for 45 minutes. She acted like I had asked for the crown jewels! I was disappointed that they weren't allowed in the soft play as I felt that for the money I paid they could at least let them play.

When we went back down stairs she gives us a receipt and the invitations. I was gob smacked at the fact that the invitations were so rubbish!

This is the invitation! it was just printed on paper! I was so shocked at the sight of them and embarrassed to send them out. For the amount of money I paid I was expecting a little bit more then a basic invitation which a child could have designed!

My son was excited by the party so I went ahead hoping that the actual day would make up for the poor service and the rubbish invitations. How wrong was I! So we sent out the invitations and got our RSVP's, we sorted out the party bags, cake and decorations all ready for the day.

The day finally came, the party was due to start at 4:00pm so we decided we would get there about 3:30pm so that we could put up the decorations we had and would be there to greet the guests.

We arrived and were told by the receptionist (who was only about 12!) That the receptionist who deals with parties wasn't there and to take a seat in the bar area, so we did and waited and waited, eventually my husband went to the reception to see if she was there and she was! There was no mention that she was there! If my husband hadn't taken the initiative to go to the reception we would have been sitting there with no notion that she was there!

When we finally spoke to the girl organizing the party (and I mean girl! she must have been about 15!) I asked her if we could go up to the party room as we had banners to put up and she said that she would take us up there in a moment, we never ended up going there before the party so the decorations had to be scrambled up at the last minute. 

We ended up standing in the foyer while the guest arrived, we was standing around like idiots waiting for this girl to give some direction. I looked like an idiot not knowing what was going on and unable to answer any parents questions as I didn't know anything myself, the girl just stood there talking to her friend. Eventually she disappeared outside and I was told by another mum that we had to follow her, she never said anything she just walked out! She expected everyone to just know what to do!

We followed her to an outside astro-turf pitch, when I booked the party I was told that it would be on an all weather pitch? Now I don't know about anyone else, but an all weather pitch to me means a place with a roof on it at least! The coach was really good and he did play with the kids and they seemed to enjoy it but the problem was their was no organization, even the coach had no idea what was going on. The girl disappeared leaving two jugs full of juice just sitting on the side of the pitch, she didn't come up to me and tell me they were there and that we were to serve the kids ourselves, it was a matter of them coming to us and asking for a drink and having to scramble around to serve the kids!

They also hadn't made any special arrangements for my nephew who was left out of playing, in the end I lost my temper and my husband helped him play as it wasn't fair for him to be left out! I was so angry as to why they would ask if there was a special needs child coming to the party if they wasn't going to make any arrangements for them to join in! The girl turned up to tell us that the food was ready and to go to the party room, again she just walked off and expected everyone to know what was happening so again I had to round up everybody.

We got to the party room and the food was chips, pizza, cocktail sausages and chicken nuggets all on platters on the table, again the girl disappeared leaving me to serve the kids their food and drink! We were left in the room with the kids bored and asking to play in the soft play. There was no party planner who would organize games, see if we needed anything, nothing! we were left to do everything by ourselves! The reason I had gone for something like this was because of the fact that I'm not well, its stressful for me to run around serving and entertaining the kids. If I had wanted to do that, I would have hired out a pitch and organized a party myself for less then the money we paid! For the same price at a local soft play area we could have gotten two hours of them in the soft play, party room with a party planner organizing everything, individual meal plans, a dress up character and party bags already made instead we were left with us really just hiring out a hall. My nephew dropped a cup of juice and it was the coach who helped us by getting a mop and bucket! It wasn't his job to, it was the girl's job as the person in charge to help us if we needed anything. There was no party planner to organize things or play games with the kids.
The girl ended up coming back at the end of the party while I was making sure that we had not left anything behind and she was huffing that we hadn't left the room!! I was shocked and angry that I had paid all that money to be treated that way! She had no right to be huffing like we were an inconvenience to her!

In short they are rude, disorganized and over priced! I have no idea what my money paid for? The food was so cheep that it properly didn't cost anymore then a fiver! There were only two birthday banners in the room and the coach couldn't of cost much for an hours worth! I had paid for a service that I didn't recieve and I will be complaining and asking for a refund! 

I would say if you are thinking of booking a football party for your kids, don't go to Tooting and Mitcham football club!

Thank you for reading! xxxx

Friday 29 October 2010

Stressed much?

Hey everyone,

I've been feeling really fatigued the last couple if weeks which means I've been really irritated by every little thing and VERY snappy. The reason why this fatigue has come at a completely wrong time is that it was my son's first birthday, their joint birthday party and my eldest birthday all within a couple of weeks of each other. Now things like this can be stressful at the best of times without being ill! The thought of having to deal with a load of screaming, hyper kids is really stressing me out and I feel like giving up and saying " I just don't care!"

I was talking to my mum and seeing a lot of status's on Facebook and Twitter about people being stressed. Stress can be a big part in someones life and can be the cause of a lot of health problems and depression. Originally stress was used by our body as an animal instinct to fight or flight in today's society we don't really need stress to bring that knee jerk reaction so what do we do about it? How do we cope with stress?

I was thinking about stress and how different people deal with it. How do I deal with stress? I take time out just to enjoy being with my family and forgetting about everything else other people use relaxation techniques or exercising, the best thing to do is try and find something that works for you.

Stress is a big killer and as a society if we don't do something about it more going to die unnecessarily because those people who stress you out are not going to care if you die, their going to carry on thinking about themselves.

Stay relaxed and thank you for reading xxxxx

Thursday 28 October 2010

Staying positive

Hey everyone,

I've had such positive reviews of my blog and I just wanted to thank you all for reading! It makes me smile to hear that you all have either been inspired or have a new insight into the world of somebody who has an illness. Positivity can be the difference between you having a fulfilling life or falling into a deep dark hole of depression.

When I went to one of my appointment's at the pain clinic the doctor said to me a study was done between the connections between pain and mood. People who had a positive mood tend to feel less pain then those with a lower mood. I have found that its not that the pain is any less when I'm in a good mood is that my reaction to it is different.

I found that when I focused on the good things in my life I became less focused on the pain I was feeling. Don't get me wrong when you wake up every morning even after a good nights sleep your tired and the pain is at its worse its hard to be in a "good mood" and that's why its important to have good and positive people around you.

I'm a very lucky person in the fact that I have a wonderful husband and amazing kids by my side and a whole lot of kind and considerate people around me but most of my communication with them wouldn't be possible if it wasn't for social sites like Facebook and Twitter. These social sites are a vital link for a lot of disabled people and without them a lot of them would be isolated with nobody to talk to including me.

Thank you all for supporting me and as always...

Thank you for reading! xxxx

Tuesday 26 October 2010

Men vs Women

Hey everyone,

I was reading a blog post today (by the darling Miss Bangs) about which sex lies the most and it got me thinking about the the sexes which is worse men or women?

Growing up I was surrounded by women who had been used and abused by men and my own experience weren't any better. I really believed that there was never going to be a man that lived up to my expectations and all I needed to succeed in life was myself. The men and boys in the area were I grew up seem to seal the fate of all men in my eyes by being spineless, selfish and ignorant but what shocked me more was that the women no matter what the man did would take them back no questioned asked! There were little girls running around trying to impress these spineless idiots who would harass anyone who was the slightest bit different. They were all like sheep all colourless and grey with no discernible personality. I couldn't understand it all until I hit puberty then it became a whole different ball game!

Growing up I was a bit of a tomboy and had never had any interest from the boys or wanted it! The only interaction I had with them was if I was in a fight! I had one boyfriend who lavished attention on me as long as we wasn't in the public eye. I wasn't popular and nor did I want to be and because of him being popular he never wanted to be seen with me in the end the relationship ended because I didn't want to be sold short. I wanted a man in shining armour who was going to fight for my honour and not be dictated by what over people thought about him.

When I did eventually start getting boys attention I was unbelievably nieve! You would think by seeing so many women abused that I had learnt by their mistakes right? wrong! I tired and failed many times to find that "Mr. Right and never succeed. I suffered with server depression when I was younger and never really had much self esteem. I made some really stupid mistakes and was treated horribly by some boys but I felt that was all I was worth. The boys, now men have probably never looked back on how they treated me they probably never think they did any wrong but by their treatment of me each one of them nailed each and every nail in my coffin. By the age of 15 I felt like life wasn't worth living.

But there was light at the end of that deep and dark tunnel in the form of my now husband. I met him while I was bunking of school trying to impress a guy who was bad news for me (although I will admit I was quite impressed with myself as he was very popular with the ladies!) but once I saw my husband something just clicked! I fell head over hills in love with him. I was like a love sick puppy (its true! you can ask my mum!) there was nothing he could do that would put me off of him. I met a women once who is a prophet who told me my husband is my Boaz (Boaz was a man in the bible who fell in love with Ruth and saved her life) and he really did save my life.

The point I'm making is that I went from completely hating men to having a man who completely changed my view and who I now depend on. He is my knight in shinning armour the guy who will fight for my honour and who defiantly has is own personality! When I was well enough I cooked and cleaned the house not because he oppressed me but because I love him. When he tells me not to do something its out of love (well most of the time!) I'm not saying his perfect but who is?

I've known men who have abused women and I've known women who abuse men the point is we can't tar everyone with the same brush. I'm not saying that we should just disregard all our experiences as our mistakes are what makes us and we must learn from them but think about what your looking for and the message you are sending out. Sometimes its bad luck that we choose someone who abuses us but sometimes we can also send out a message of low self esteem and thats what these people prey on. I know I did and I'm not saying that it was my fault that I was abused but I never felt like I was worth any different, I never stopped the abuse. 

All I'm really trying to say is don't push someone good away because your scared of being hurt again but don't settle for anything less either! There is no rule book or manual to love but as long as you stay true to yourself that person will find you. There will be that fateful day when you finally meet and everything in your life will make sense! 

In conclusion there is no answer to who is worse because its not question of sex its a question on human nature. There is not a reason why its a matter of these peoples choices in life and in the end its them who's got to answer to their actions.

As always thank you for reading and be blessed! xxxx

Monday 25 October 2010

I'm back!!

Hey everyone,

I'm back! Sorry I haven't written a blog post in awhile my computer has been broke and believe me its been driving me crazy not being able to blog! My thoughts have been jamming in my brain. Its not been pretty! I had so much word vomit that Facebook and Twitter crashed from being over used! 

Well what to say has happened the last couple of months...
I've had my brain scan which was something I was terrified of having as there has to be a cage over your face. Something I have not relished having but luckily I got to have my husband there holding my hand through the whole experience, if I didn't have him there I don't think I would have been able to go through with it! Its been a hard thought to get over but the brain scan was like doomsday for me, it was a matter of bad or worse news for me. Most people go to the doctor hoping that they don't find anything seriously wrong but I was hoping that they found a terrible disease because them finding nothing was worse then them finding something. To explain my GP has told me that if the hospital DON'T find anything I will be sent back to him and he has no idea how to treat me! Now I know what your thinking and yes it was unprofessional for him to say something like that but he is a very honest and straight talking doctor and that's what I like about him. There are never hidden messages or any 'beating round the bush' its straight down the line, black and white statements so I know where I stand in the big scheme of things. The problem with that is your mind gives you hysteria thoughts like I will for the rest of my life have to fight to be believed, I will have no support, have no idea what to tell people when they ask whats wrong and absolutely no help at all this in-turn brings me back to original point that my life would be a whole lot worse if they don't find anything! So what am I left with? the fact that I have either a terrible, life long disease like MS or that they have no clue what I have and how to treat it. What ever way I look at it I'm still left with those cold, hard facts that either way I'm never going to get better and I'm never going to have a "normal" life again!

The other changes that have happened is that I have completely stopped taking Tramadol and believe me it has been no small feat! I was taken two every four hours, four times a day to taken absolutely nothing! My doctor advised me that the neurologist wanted me to stop taking them as my problem was a purely neurological problem and to prove that some of my symptoms where caused by my disorder and not by a side affect of the Tramadol, so that's what I did! I cut down to four tablets a day then finally nothing a day. It was the most difficult thing I ever had to do my body had got so used to the medication that I felt the affects as soon as I started to cut down. I ended up in A&E because of an intense migraine I had, had for two days and the extreme pain I was in, I didn't sleep for four days because of the intense spasms I had, sever depression and a general feeling of sickness. I am proud that I have done it but my condition has got worse because of it.

I get really extreme spasms which stops me from sleeping. Imagine a real intense feeling in your legs and arms that you need to move, you can't fight this feeling and you have to move every couple of seconds, that's sort of how a spasm feels. There is nothing I can do that helps, there are medication that helps but are 'unavailable' to me because I don't have a diagnosis or am able to see the pain clinic or neurologist when I have a problem. I will admit (because I'm not ashamed too) in my desperate hour I tried a bit of cannabis. Now anybody who knows me, knows I'm dead set against drugs and have no tried it since my wild days in college but I was so desperate by day four of no sleep I would have tried anything!

My thoughts? Well the fist night I toke some I was so terrified I completely smoked the whole joint in a matter of minutes! (For all those authority figures who might be reading this I did not do it in or around my home and I have not continued to smoke it and have none on my person or in my home!) I got so "buzzing" which has never happened to me before (when I've smoked it before I just felt tired and sick so another reason why I have never liked it!) I got so happy and just sat on my bed burping and laughing at myself! My legs continued to spasm it just didn't affect me! The only problem I had was the burning pain got really intense from it and I was to scared to take my pain killers with it so I was in pain with that and kept awake from the pain! The second time I toke it I only smoked half and the feeling wasn't as intense but I got "buzzing" all the same. This time I went straight to sleep which I found really difficult because the room was spinning and my head was swimming! The third time was the rest of the second joint, this night my experience wasn't good. I had been up most of the night with the spasms and had taken Amitriptyline to help me sleep which hadn't worked so I decided I'd try the cannabis. This I think was not a good idea! I felt so awful! I felt like a huge weight was pushing me into the bed and I felt like I couldn't breath! This made me have a huge panic attack so I stayed up anyway scared that I wouldn't wake up if I went to sleep and I wanted the feeling to wear off before I attempted to go to sleep again!

So since then I have not tried it again as that feeling has never left me and when I think of trying it again the feeling comes flooding back! I know you probably think that I'm such a wimp but I think the concoction of the cannabis, Amitriptyline and the mental state of my mind was a bad one! I have no idea what to do about the spasms as I still have them and they seem to be worse the night before a busy day which is a royal pain in the bum! and I know I will never get any real help until I see the neurologist in November. In short, my life is on hold until then but luckily this time of the year is busy for me as on the 22ND was my son's first birthday and my eldest son's birthday on the 13Th of November who is having a joint birthday party with his brother on the 30th so plenty for me to think about and do! 

I hope your all well and as always...
Thank you for reading xxx