One year anniversary the lessons I've learned- Isolation

Hey everyone,

The song from Chicago "Mr. Cellophane" really rings true for me this last year. When your in a wheelchair people pushing you don't really understand how isolated and lonely it can be. I have found that I will be looking at something or talking to someone and because the person pushing me needs to leave or they want to do something I'm hijacked and taken away to what ever I was doing. My views, my opinions and my will goes out of the window as soon as I go into the wheelchair. I have had an experience were my sister toke me shopping because she is so used to looking after children that she dumped me next to the aisle and told not to move, when I tried to wheel myself to get something she came back and said "I told you not to move!" grabbed the handles and wheeled me away from what I was trying to get. My husband has listen to me and taken on board what I've said as its easier from me to get mad at him and tell him how I feel then other people. I'm still me, I still have a voice and a mind of my own but I feel more and more that its "easier" just to sit back and not argue, no-one understands how I feel and what I'm saying. I hear more and more "I Would love for someone to push me around all day" but when their independence is taken away not just physically but their wants too they wouldn't appreciate it as much. Its easy when you can walk, when someone wants to go one way and you the other to says you go your way and I'll go mine and just do it but in a wheelchair its not that easy and more often then not the will of the person in the chair is over thrown.

Another cause of isolation is when you stuck in your home day after day and are not able to go out and experience life. Those in charge of housing don't care that your stuck indoors everyday because your in a flat on the second floor with no lift and you can't make the stairs, they go home each night to their families and leave their worries at work, the name and number on the paperwork. People who know you and family always have sympathy in the beginning but that wains after awhile as their life continues so you spend days in your home with not a lot socialisation.

Being in chronic pain most days can cause isolation as most people don't understand what your going through and your abilities. Pain can make you irritable to so being around people is difficult. I feel isolated most days, I feel left out of family as I can't just go and visit people and because they would need to come to me its easier not to. Friends parties, going to social advents or even just going to the pub is out of reach to me.

I have learnt to just deal with my isolation and argue to much, if people don't want to understand I can't make them. Life goes on for everybody else and the focus on their own life's come first, that's normal! Even now I'm focusing on my own life and my own troubles.

I'm hoping a part of my isolation is resolved soon by moving to a different home where I would have the ability to go out more, I hope that those at Merton Priory Homes know how much isolation I'm going through and need help soon.

Please help me soon.

Thank you for reading xx

One year anniversary the lessons I've learned- Health care professionals

Hey everyone,

One thing I've learned over this last year is that Health care professionals only care about money and lowering their workload. As we grow up we're given this notion that when we're hurt or sick, depending on severity we go to our GP or Hospital and get help, this isn't the case all the time.

My experiences with GPs has been varied one, when I was little we had a GP in which you would go and tell him what you had, what medicine you needed and he would just write a prescription. When I fell pregnant with my son I went to my GP to say I was pregnant he gave me a prescription and said to book antenatal with the reception, I left and went down to the reception to find out that I was supposed to be given a letter in order to book my bed at the hospital for when I had baby. I had to wait at least an hour for the GP to have a break in seeing patients to get this letter, then when I went to the chemist to get my prescription of folic acid tablets it turned out he gave me somebody else's prescription! Because of this I chose to have all my antenatal appointments at the hospital.

My second doctors surgery I never really had any experience with other then to have my son's injections.

My tired was when I moved to the area I'm in now, this was not a good experience from the start. The receptionist were rude and very rarely wanted to give you an appointment at all. The first time I went to my doctor my glands had swelled up in my neck, under my arms and groin but I wasn't feeling sick or that I had an infection, the doctor said that I had an STD. I was mortified! She said this in front of my husband who was sitting next to me, luckily we have a very trustworthy and honest relationship and he instantly thought she was wrong otherwise this doctor could have caused a relationship and marriage to break down. Even though she said I had a STD she never gave me any antibiotics of toke blood and a swap for testing, she didn't even send me to the GUM clinic in the hospital who deal with STDs. I was angry but just went home, I felt like there was nothing I could do as because of my postcode it was my nearest doctor surgery and nowhere else would take me.

The next experience I had was when I fell pregnant with my second son, because I found out I was pregnant at eight weeks and managed to see the doctor around nine weeks pregnant. The problem I had was to book my three month scan the doctors needed to fax over a letter to book my bed and my antenatal appointments, the fax kept getting lost! It ended up that I got an appointment (much to the annoys of the receptionist in the scan department!) for my scan a couple of days before.

During my first antenatal appointment I went to the doctors and sat in the waiting room where I see a blood pressure machine so I decided to take my blood pressure, making it useful to the doctor. When I went into the doctors room for my antenatal she asked me where my urine example was? I was not given a specimen cup so I hadn't done one, she had a go at me saying it was important to aways have one before coming in for the appointment. This made me angry as I was given anything to give the example in and anything I brought from home would have been contaminated!

My last experience with this doctor was when I had Singles while I was pregnant, for those who might or might not know the chicken pox virus can be very dangerous while pregnant. I went to see the doctor (before knowing it was Singles) to see what was happening, the doctor toke a blood test and on the way out of the door I asked him what it could be? He said that he thinks it is Shingles. I was to have the blood test by the nurse so when I went to the reception to book it, the receptionist just looked at me in disgust and offered me an appointment the next week! I said that I would go to the hospital which would be quicker, while I was there I asked for an appointment for my son to see the nurse she offered me a couple of days later despite the fact she told me a couple of minutes before that the nurse was busy until the next week! I just left it and wasn't going to argue.

I rang up a week later to hear from the snotty receptionist that I have had chicken pox, I said "what does that mean?" she just said short tempered " I don't know it just says you've had chicken pox". At this moment I thought "but I know that!" If the doctor had asked me if I had chicken pox in the past I would have told him that I had when I was a child! It turned out that I had waited a week to find out I had, had chicken pox. I asked if I could speak to the doctor about the situation, the receptionist wasn't happy about this. In the end the doctor did nothing for me, it was my midwife in the end who sent me for an emergency scan to make sure my baby was OK.

Once I had, had my son I tried to book my son's first injection which I knew was going to be hard as it was the week of Christmas I was refused an appointment by the receptionist. I phoned the week after Christmas and was told that they weren't doing routine appointments till the new year. I rang the first working day of the new year but was told that because of the snow we had the nurse couldn't get in, the next week I rang and was given the same excuse, that was enough for me. We registered in a doctors that had just opened up near us and never looked back.

My doctor is an amazing man, he doesn't beat around the bush or try and baffle me with medical jargon. When he doesn't know something or something is out of his hands he lets me know, he also tells me straight if I'm being a hypercondriac. He explains everything clearly so that I can understand, his officiant and has restored my faith in GP's. When me and my husband tried to show him our appreciation by buying him a bottle of wine and his wife some flowers he couldn't take them as it would be viewed as a bribe. I mean come on people! Surely money would be a better bribe then a bottle of wine and some flowers?

The hospital isn't any better! I have never met my consultant and when ever I have seen a resistor it has been for five or ten minute appointment and four months in between. I have had a neurologist who was rude and accused me of benefit fraud and making up my symptoms and it all being "in my head". When I have been in serious enough pain to even have to call an ambulance and given Morphine and gas'n'air I have been just chucked out on Morphine with the excuse that I have a "chronic illness" and its "not their job!".

In short bear in mind the fact that if you ever become ill Health care professionals don't care about you, they only care about the big pay package they will get at the end of the month. Know your right for treatment and know the fact that you are entitled to be helped otherwise they would by pass you and forget you. My nan never spoke up when she was mistreated and ended up being killed by those who were suppose to help her. The NHS and Health care needs to be reformed, they need to go back to the vision Florance Nightingale had.

Thank you for reading xxx

It may seem a strange principle to enunciate as the very first requirement in a hospital that it should do the sick no harm.
Florence Nightingale

We should treat each patient like an honored guest
Florence Nightingale 

One year anniversary the lessons I've learned- Tramadol

Hey everyone,

In honour of my one year anniversary this month of becoming sick I've decided to write a few blog posts about what I've learnt.

I was put on Tramadol in January 2010 by my doctor with the dose of one tablet four times a day during the year and up till the point of coming off of them my dosage went up to taking two tablets four times a day.

Tramadol is a narcotic-like pain reliever, it is used to treat moderate to severe pain. Tramadol extended release is used to treat moderate to severe chronic pain when treatment is needed around the clock, it may also be used for other purposes. I was given Tramadol to help with pain relief for my back pain and the neurological pain.

I wanted to write about the true nature of Tramadol as I don't think a lot of people know or really understands the big effects of Tramadol. When I first was put on Tramadol the first two weeks I felt like a zombie, I might have been there physically but mentally I was high as a kite! I have no or little memory of those two weeks, my pram wheel broke and I needed to go to Mothercare to fix it and had to have my sister deal with it all while I stood there cross eyed and dribbling! Eventually I managed to function while taking them.

September of last year I was told that I needed to come off of Tramadol as I have Intracranial Hypertension which the Tramadol was making worse plus the Neurologist wanted to find out if some of my symptoms where down to the Tramadol. It was a really bad time for me.

I went through a serious withdrawal process, I began by cutting my dose to one four times a day from two four times a day. My doctor decided that this just wasn't quick enough for him and I had to go cold turkey, I didn't sleep for four days because of spasms. I fell into a deep dark hole and felt like killing myself, I spent two hours on the phone to the Samaritans (who do a great job!) in the early hours. I had sweating and the shakes, I was in so much pain had server spasms and restless legs, I had hit an all time low.

As the weeks went on I was able to manage the pain through Paracetamol and co-codamol and was more focused and alive from coming off them. I have actually found symptoms that the Tramadol was masking like how server the spasms were. In short since coming of the Tramadol I have had a better sense of reality.

Beware the affects of Tramadol and the fact that it is very addictive and has a major withdrawal, if your thinking or have been offered Tramadol by your doctor research it first and bere in mind what I have said as I went into it blinded!

Thank you for reading xx

From Wikipedia
Physical dependence and withdrawal
Tramadol is associated with the development of physical dependence and a severe withdrawal syndrome.^[59] Tramadol causes typical opiate-like withdrawal symptoms as well as atypical withdrawal symptoms including seizures. The atypical withdrawal symptoms are probably related to tramadol's effect on serotonin and norepinephrine reuptake. Symptoms may include those of SSRI discontinuation syndrome, such as anxiety, depression, anguish, severe mood swings, aggressiveness, brain "zaps", electric-shock-like sensations throughout the body, paresthesias, sweating, palpitations, restless legs syndrome, sneezing, insomnia, tremors, and headache among others. In most cases, tramadol withdrawal will set in 12–20 hours after the last dose, but this can vary. Tramadol withdrawal lasts longer than that of other opioids; seven days or more of acute withdrawal symptoms can occur as opposed to typically three or four days for other codeine analogues. It is recommended that patients physically dependent on pain killers take their medication regularly to prevent onset of withdrawal symptoms and this is particularly relevant to tramadol because of its SSRI and SNRI properties, and, when the time comes to discontinue their tramadol, to do so gradually over a period of time that will vary according to the individual patient and dose and length of time on the drug

One month before heartache

Hey everyone,

I have been following The Broken of Britain on Twitter for a while now and they have started a campaign against Disability Living Allowance cuts made by the government called "One month before heartbreak". I decided to write a blog post in honour of my one year anniversary of having a chronic illness this month and to help the campaign about what disability means to me.

I have had many experience with disabled people in my life for example I went to school and college with disabled girls and through the church youth group would perform and help out at a disabled group in the YMCA, my step-dad even voluntary drove a disabled mini bus which transported disabled people around. Five years ago disability went from something distant to a very real reality, my nephew was born at twenty-nine weeks and now has cerebral palsy. It was difficult as a family to come to terms with this and even harder for my sister but as a family we bound together to support each other. My sister and us as a family got a lot of help with understanding the needs of my nephew and support from a great group called JOG under the organisation called Portage.

Portage do so much wonderful work not just for the child and their parents but for the family of those affected. They help by giving practical support as well as bringing parents together of disabled children so they have a support network and can socialize with other parents who understand. They also are there to help family members with any questions they have and help them understand the needs of the child as well as helping deal with the emotional distress family can feel. They are a wonderful organization and should have a lot of recognition for the work they do. Including the work of Portage my sister also has the help of Young Careers for her other three children to help them deal with having a sibling who's disabled, as well as helping them deal with the fact that most of their parents time is spent helping their disabled brother and making them still feel special and wanted rather then fading into the background and resenting their brother, they also do some amazing work. 

Its not all rosy for my sister, she has been told by our local council (Merton) that she can not have a extension on the back of her house which would have a wet room in it for her son or a stair lift to help him to the toilet or his bedroom. She has also been told that she can not have any adaptations like a lowered sink so he can brush his teeth by himself or even a ramp into her home, the reason for this refusal is that the foundations of her house are sinking and needs under pinning which costs to much money. She has been told that her only option is to move, the problem being is that there is no available housing to suit my nephews needs in Merton so for my sister and my nephew they have to do the best they can till something becomes available, this is causing a lot of strain as my nephew is five now and weighs a lot so by my sister having to pick him up and carrying him up the stairs is causing her back problems, it is also robbing my nephew of independence and a chance of a normal childhood. I also want to bring to your attention that the pavements in Merton are so poor that my nephew has tripped over his walking frame so many times that he has had to have plastic surgery on his chin and has been told that his chin can not take another fall and has made him terrified of using his walking frame which means his chances of walking independently slim.

Despite the fact of having a disabled nephew and interacting with these groups it wasn't a daily issue for me, "disability" was only an issue when I spoke to my sister or see my nephew. I never really knew anything about DLA other then the fact my sister got a payment every month and a car to help transport. I would see my sister dealing with these issues that comes with having a disabled child but it never affected my life other then seeing the fight and distress my sister went through to get the littlest thing for her son. To be honest I thanked my lucky stars that my son decided to stay in the womb rather then being born at thirty weeks when I went into early labour and was born healthy.

In March of 2009 I found out I was eight weeks pregnant which was a huge shock as me and my husband hadn't planned to have a baby, I was working at the time as a Dental nurse and planning on starting a course. In all honestly my employer knew legally he would have to pay me maternity pay but didn't want to so made working impossible for me, so due to the stress I gave up work in April of 2009. The other reason I gave up work is that at three months pregnant I developed burning stinging like pain in my groin which made it nearly impossible to walk, I mentioned this to my midwife who said it was a hormone problem which was causing my pelvic to move which would go as soon as I had my baby, she referred me to pregnancy physiotherapy which I didn't find useful. The physiotherapy was full of women who was quite late in their pregnancy and had problems due to the weight of the baby, I was the earliest pregnancy there.

During my pregnancy the burning stinging pain continued as well as me feeling very tired as well as not being able to sleep and a general feeling of unwell, which both me and my midwife couldn't put down to normal pregnancy symptoms. My labour was relatively easy as a labour goes apart from the fact I had a fever and was throwing up during it, I would just like to point out that I was throwing up before I used the pain relief gas'n'air which can make you sick.

After giving birth to my baby I continued to feel the burning pain in my groin and a feeling of being unwell and tired. I have had Sciatica for six years which in the end prompted me to go to my doctor a year ago this month as I was in extreme amount of pain.

This time last year my life changed dramatically, I have lost most of my mobility and spend most of my time housebound and bed bound. I have had to go through test and four months wait to have a five or ten minute appointment with a neurologist. "Disability" has become a huge part of my daily life which I never thought I would ever have to face. Disability used to mean to me something that happened from birth or a terrible accident now disability means to me hardship.

I had to wait six months to be awarded DLA before that my husband was on JSA and would have to leave me to sign on and was put on courses which meant he was away all day, I needed him at home but as far as the Job centre is concerned if your not looking for a job then you are not for filling your contract and would stop your money, if I was that bad I would be on DLA.

I have a constant battle with people feeling I do not need DLA as I don't have a disability you can see or from birth but if I wasn't entitled then I wouldn't have been awarded it or been told by a health professional I was! I have been refused access on to a bus before! I also live on the second floor flat that hasn't got a lift, the stairs are to much for me to cope with. I'm supposed to be being moved yet that was in June 2010!

I have had my life turned upside down this last year and had to deal with looking at life in a different way. I feel everyday is a learning experience on how the world views disabled people and the daily struggles they go through.

Without DLA my husband wouldn't be able to be at home with me and look after me and my son, I wouldn't be able to afford a wheelchair and the repairs as like I said before Merton pavements are terrible and have broke both front wheels of my wheelchair and to repair them is £50! Without DLA I wouldn't be able to afford to repair it. Without DLA we wouldn't be able to afford the cab fare to and from the hospital or my doctors. DLA is my lifeline in a very hustle world and the government is cutting that lifeline short and fraying the edges.

Disability is a label I never thought I would wear, I live in a constant battle everyday with chronic pain, a lack of mobility and chronic fatigue and still have to attempt to live a "normal" life, without DLA to survive I would have to juggle having a job with my health problems, two kids and run a household.

So if you are reading and see the cuts on DLA don't affect you, stop and think if you or a member of your family got sick or had a heart attack or stoke then you or them will rely on DLA. Think about it, it is your fight too.

Thank you for reading xxx

Links to those mentioned in my blog:
The broken of britain http://www.facebook.com/photo.php?fbid=178174472194634&set=a.168981633113918.40745.168974116448003&pid=611492&id=168974116448003#!/thebrokenofbritain
Follow @brokenof britain @bendygirl @funkyfairy22
http://thebrokenofbritain.blogspot.com/
Bendy girl blog http://benefitscroungingscum.blogspot.com/
Portage http://www.portage.org.uk/

The highs and lows of my Christmas hols part 1-Selfishness

Hey everyone,

I'm sorry that I haven't posted since just before Christmas but I've been really sick with Flu and a chest infection plus on top having really bad fatigue while my body fights these viral diseases, I have hardly been awake and when I have I've had very little energy.

I'm going to talk about the highs and lows of my Christmas holidays and the lessons I feel it gave to me, my first lesson is selfishness.

We, as a family caught the Flu from my sister and her children who I looked after for two days before Christmas as she hadn't done any shopping (presents or food) and couldn't handle taking the kids with her especially as they were so ill (although we didn't find out they were sick until they arrived!). My sister has four children (two step children and two of her own) the youngest being disabled with cerebral palsy, on top of the busy life of having four children and one being disabled she looks after her brother-in-law with MND (Motor neuron disease), the reason she had not been able to do her shopping was because she was taking care of her brother-in-law or so I was told.

We babysat my sister's four sick kids plus our own two kids from ten o'clock in the morning till around eight o'clock in the evening. When my sister arrived to pick her children up I asked her if she had finished her shopping and she said that she hadn't got hardly anything done as they didn't leave her brother-in-laws house till around 2pm and most of the day was taken up by his Christmas shopping, me and my husband offered to have three of the children (as the one with cerebral palsy won't stay with anyone else) stay over night and again would have the four of them the next day (I know, don't know what the hell we were thinking!).

I received a text from my sister the next day to say that my nephew would be staying at home with a friends girlfriend as he was really ill, (the reason being as her "friend" would allow him to do whatever he pleases and allow him to do nothing but play the PS3 all day, his 5!) so again I had the kids all day until eight in the evening. When my sister had arrived I again asked if she had completed her Christmas shopping and she said she hadn't, I was due to go over to my sister's house to exchange Christmas presents the next day but I was so physically exhausted I just couldn't have them stay over again. The next day my sister was due to pick us up around midday to go to her house (although I was so exhausted I had only just woke up by then) but she was running around so was a couple of hours late, eventually we went round to her house an exchanged presents.

Late Christmas eve I had a phone call from my mother who was extremely upset, through sobs I managed to piece together the events of that day. My mum and sister had arranged that my mum would spend Christmas eve exchanging presents with my sister and her family as she was at my brothers Christmas day and with me Boxing day. My mum had rang my sister around ten in the morning and had arranged with her to go over around midday. My mum arrived to find my sister not there and her boyfriend sleeping on the sofa, her and the children sat silently watching t.v trying not to disturb my sister's boyfriend waiting for my sister to come back. Eventually my sister phoned her boyfriend around 3:30pm to say she was on her way to Kingston (a good hour drive away) as her brother-in-law had ordered some jewelery from Links of London which had not arrived and she needed to go collect it, so my mum let the children open their presents and went home. My mum was so upset that they had made arrangement, my sister even verifying that morning and yet she still wasn't there.

My husband had left a present we had brought in my sister's car so on Christmas eve she dropped it off (around 2ish) and said to my husband that she needed to be back at the hairdressers (which is around the corner from her house) wait for her brother-in-law to finish having his hair cut then go to Kingston, with that information my sister was around the corner for around an hour and could have spent that time with my mum.

I'm going to be really controversial right now and say although my sister was very much in the wrong so is her brother-in-law, although we're not actually suppose to speak bad of those with disabilities I see her brother-in-law being in the wrong just as much as she is. The reason I say this, although I'm in no way comparing my physical disability to his but I didn't have anyone to help me with my Christmas shopping and although mine and my husbands family (except my sister) help as much as they can, we're pretty much on our own when it comes to shopping, so my point being if I was able to do my present and food shopping on my own surely so could he?

My husband doesn't drive and we very rarely have anyone to ferry us about so I did my shopping on the net, I ordered all of my presents and had them delivered and ordered my Christmas shopping from Asda's and had it delivered a couple of days before Christmas, he has a laptop and a Ipad so if I could why couldn't he? He has the physical ability to use the Internet and Ipad and regularly does so I can't understand why he didn't. I'm not saying that he shouldn't expect help but their both to blame for leaving everything to the last minute. Christmas comes once a year and is all about family so the fact my sister was too busy running around for her brother-in-law even though he lives with five other men who help him and the fact his sister who is down as the other named driver, plus he has a girlfriend all of which could have taken him for his hair cut and gone to Kingston but instead he insisted my sister take him and my sister despite making plans with my mum toke him.

I will say it, he was being selfish! Yes disabled people can be selfish because regardless of able-bodied or not we are all human and selfishness is a very human trait. He had the power and means of doing his present shopping way before Christmas and he didn't have to do any food shopping so leaving everything to the week of Christmas, leaving my sister's kids without their parents when their sick that's without leaving my mum sitting their wanting to spend a little Christmas with her daughter and grandchildren,is selfish and yes your right my sister could have and should have said no but that doesn't excuse his behaviour.

So my point really is regardless of being able-bodied or not being selfish is still selfish, its quite easy when you become ill with a chronic illness to say "fuck you" to the world and be angry with everyone especially those who abuse their body but its not about that you have to get over it and move on otherwise you get bog down with being angry and hating the world that you forget the magic in it and those you love, you can't hate the world or hurt others just because something no-one can control happens to you. The fact that he is disabled doesn't take away the fact he was selfish and irresponsible and should have thought about things and prepared sooner knowing the fact that he now his life has changed and doesn't have physical advantage most people have.

The selfishness of my sister is that despite the fact me and my mum especially are the first people she comes to in a moment of crisis and will always be yet she couldn't even spare my mum a couple of hours at Christmas it becomes an issue, an issue I'm sure we could all do without. Although this year her boyfriends family have become the best thing since sliced bread they were how ever nowhere to be seen when her son was born at 29 weeks and was in neonatal (his mum saying she "doesn't do neonatal"!) or when their son was diagnosed with cerebral palsy.

You only realise how much someone does and is there for you when its gone so cherish those who are there and never take them for granted or you might just wake up one day and find that person has gone and you might never be able to get them back.

Thank you for reading xx