Category Archives: Random Rants

Was “Fear of Autism” the Issue?

Or a situation handled poorly by mother and flight attendant?

Was "Fear of Autism" the Issue? Or a situation handled poorly by mother and flight attendant?

A few days ago I saw a video of a family being escorted off a plane by police. The title of the video was ”Fear of Autism” Family Removed from United Airlines Flight. I really felt for the family; it can’t have been nice to be asked to leave and then to have other passengers filming the scene. This is the original video that I watched:

I wanted to know what had happened. Why would people have been scared of an autistic child? So I found this news report with an interview with the mother, Dr Deborah Beegle. She explains that there was an issue with the flight providing a hot meal, which is what Juliette, her daughter needed. After much discussion with the flight crew about purchasing a hot meal from first class, she eventually managed to get one and her daughter was fine after that. But, the flight made an unscheduled stop and the family was asked to leave the flight. I could really feel for the mother and understand her frustration at what she feels is discrimination against her child, however as I was watching the interview, there is a statement that the mother makes which made me think what she said to the flight attendant may have been more of an issue than her child’s autism. Take a look at the video and see what you think, the statement is at around 02:14.

I am an ME sufferer and so I can totally relate to how damaging and hurtful the ignorance of society can be to people with illnesses that are so misunderstood. We get called lazy, like we have a choice not to be so debilitated, and in the same way these poor autistic children get called spoilt brats when they have no choice in the way that they react and respond to situations. I have people within my extended family who are autistic and my sister has also worked extensively with autistic children and their families. These kids are not playing up, but rather some like Juliette, cannot verbalise agitation from hunger and they have specific dietary requirements. I looked through the comments section of online news articles about this incident and I was pretty disgusted by some of the awful comments made about the child and about how she is just a spoilt brat. I totally disagree with those kinds of statements.

However, having said all that, I also don’t think the issue here is the child but rather her mother and the flight attendant. Before everyone jumps down my throat for being unkind, I would like to explain why I think this. The mother has posted her own account of the incident on Facebook and I’m basing the following opinions on her statement.

The Mother’s Mistake

I am an adult with more than one chronic illness and I have special dietary requirements. More embarrassingly, I can also have urgent toilet needs and I need to eat at specific times. Any trip that I make, and I mean any, from a short trip to another part of the city to longer car journeys and flights, has to be carefully planned. The outbound flights are usually easier because I have everything I need at home, so it is easy enough to pack up a meal or two. The inbound flights are much harder because it may not be so easy to get everything that is needed. The Beegle family was on their way back from a Disney vacation, so I can understand it may not have been so easy for them to have everything that Juliette needed. Juliette cannot make the kinds of decisions and choices that I can, but her mother who is responsible for her care sure can. This is what she had to say:

“ My family were on our way home from Disney World. I asked the flight attendant if she had any hot food (Juliette will not eat cold food and had refused her dinner prior to the flight). We had a back pack of snacks but she did not want what we had. The attendant sold me chicken sandwich but it was not hot and Juliette would not eat. The flight attendant said that is all we have. I asked if there was some hot food in First Class. It was a very long flight and I wanted her to get something in her system. The flight attendant went to ask and a male flight attendant in First Class. He came back to tell me that they could not serve the hot food from First Class because we were in economy. I offered to buy the rice they had. He said no. For 40 minutes, I kept trying to think of something that they had that she would eat. He told me no every time. I finally, told him that I am platinum on United thinking he might help. He said No. I again asked if he could make an exception for our daughter who faces autism. He said, no he could not give her the rice from first class. I asked if I could get some chips or something salty for her. He said they had no chips. Juliette was beginning to cry. Frustrated I said, after she has a melt down and tries to scratch in frustration, will you help her then? He said he would see what he could do. He came back scowled at me and gave her a hot meal. I thanked him and offered to pay for it. He did not answer and went back to First Class. i>

I understand that it can’t be easy to always predict how Juliette will react or what she will need, but the mother says herself that her daughter had refused dinner prior to the flight. Surely at that point she would have known that at some point during the flight her daughter was going to feel hungry and would probably need something hot. Also, she has a back pack full of snacks, but not a bag of chips? I swear to you I am not trying to pick on the mother, but I do feel she needs to take some responsibility for not being better prepared. But hey, she’s human, and it happens, especially when you’re rushing about taking care of a child and trying to catch a flight, so she was unable to buy something that she could have asked the cabin crew to warm up for her. Also, I think she was getting frustrated with the lack of assistance from the flight attendant, and that is understandable too as I do think he could have done more to resolve the issue, so I believe she chose the wrong words when she said “after she has a melt down and tries to scratch in frustration, will you help her then?”. Now she probably meant that her daughter would scratch herself rather than scratch anyone around her, but what Dr Beegle effectively did with this statement is let the flight attendant know that her daughter could get violent if she does not get what she needs. The flight attendant may know zero about autism, but he has to trust that this mother knows her daughter.

United Airlines Flight Crew

You have got to believe that there has to have been a better way for the cabin crew to have dealt with this situation. Cabin crew are like people in any line of work; you’ll get some that are helpful and just brilliant at their jobs and others that have become jaded and annoyed with the troublesome customers/passengers. I have needed help with wheelchairs and walking aids due to my limited mobility and in the same trip I was brought to tears by the kindness of cabin crew members as well as the complete callous lack of care I received in the same trip. We don’t know the flight attendant’s side of the encounter as he hasn’t written a Facebook post as far as I can tell. But there has to have been a better way for him to have dealt with the mother of an autistic child. You get the impression (from her statement admittedly) that her request for a first class meal is what got his back up. The pilot’s decision to make the unscheduled stop and offload the family has to have been based on the flight attendant’s account of the incident. Also, the mother says Juliette ate and was watching Pocahontas when we heard the flight attendant say, “We will be making an unexpected landing in Salt Lake due to a passenger in the back having issues.” We were in the front of the plane and wondering what was going on. The plane landed and the flight attendant asked if there was a medical doctor on board. A man came forward two rows in front of us. The man there said, “I am fine. I do not need a doctor.” The door opened and two paramedics came to the man two rows ahead of us. He said again said he was fine. The paramedics left him and came to my row and said, “Everything okay here?” Confused, I said, “yes.” The paramedic asked if Juliette was okay. I said, “she’s fine.” Did she scratch someone? Puzzled I said, “no.” So did someone else need a doctor on the flight? Had there been a report that a passenger had been scratched?

The Need for More Awareness

I agree with Deborah Beegle; there does need to be more awareness among flight attendants on how to deal with families that have members who have special medical requirements. In A Letter to JetBlue From the Mom of a Child With Autism a mother is so grateful for the help and attention they received during a flight. United Airlines may want to pay attention. Someone reading this may wonder why I went to so much effort to point fingers at a mother doing her best to care for her autistic child and a flight attendant. I assure you, that is not my intention. Rather, I feel that while it is important to raise awareness about illnesses and conditions that are so misunderstood and that affect a substantial number of people, cases like this can actual bring negative attention to the cause. The mother may have ten pages of statements saying Juliette was not a threat to anyone, but any lawsuit she brings about may show that it was her own behaviour in the situation that escalated the problem rather than anything her daughter did. When you make the whole thing about autism, rather than about some really bad communication between a passenger and a flight attendant, it may draw at people’s heart strings, but it is not accurate and you actually risk further discrimination and misunderstanding. A quick look at the comments left on reports of this case, even though the press has largely been sympathetic to the mother, illustrates my point, especially in the comments from other parents of autistic children who do not agree with Deborah Beegle’s actions. In fact there are wars being fought in the comments sections of various sites that have reported this story with people disapproving of the mother’s actions and others accusing them of being heartless. Many said they would never fly with United Airlines, while others said they would definitely fly with United now as they take security so seriously.

So what do you think? Whatever your views, please be nice and understand the viewpoints of others.

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What Can We Expect and Do to Fight Tory Persecution?

What Can We Expect and Do to Fight Tory Persecution

Last week on election night when I saw the results of the exit polls I felt such despair and grief I cried and cried. The darkness was so profound that I could not even bring myself to talk about it. What made it worse was the fact that I was not alone and when I looked at the tweets of other ME sufferers, they too were feeling exactly the same, in fact some people even feared for their lives. That may seem like some extreme hyperbole but I can assure you, they have good reason to feel that way. So here, finally, are my thoughts on the election results. We are ME sufferers, what can we expect and do to fight Tory persecution? I’m going to tell you.

I don’t really get involved in politics. What I mean by this is that while I have firm political beliefs and ideologies, it’s not something I choose to write about. So I didn’t discuss anything relating to the elections in my various posts and maybe I should have. In fact, in the run up to the election, I was more interested in May being ME Awareness month and I had planned to release a series of videos and articles to raise awareness of this illness. Despite my planning, I had to deal with a bout of food poisoning and then full blown flu in April, which I am still recovering from, so everything got delayed. But I made sure I had registered for my postal vote and I filled out the ballot paper and sent it off. It was a wasted vote because the Conservatives (whom I did not vote for) were assured a win in my area. Yet I still voted. I don’t want to discuss the reasons people should or should not vote or even the electoral system and the pros and cons of ‘First Past the Post’ or how this travesty was allowed to happen. These are things that are being discussed everywhere at the moment. I am more concerned with how the results of this election affect us as very ill people.

Why We’re Afraid

One of the very first things the coalition government did when it came into power 5yrs ago was to wage a war on the ill and disabled on benefits. We were all portrayed as lazy, scroungers and it was implied it was our fault that the country was in such economic dire straits. “We’re all in this together” we were told, while it was the most poor and most ill in society that were attacked. I don’t deny that economic reform is needed, but why start at the bottom? Why not start at the top? What kind of a government points the finger at the ill and poor instead of at the real culprits of the financial crash? I’m not naïve enough to say that things would have been much different under a Labour government, but the fact is that it was the previous coalition that came after us with a vengeance.

Here are just some facts about harmful changes that government has made:

  • The Under Occupancy Charge, also known as the ‘Bedroom Tax’, affects 660,000 families 63% of which have a disabled family member.
  • 33% of NHS Walk Ins, 66% A&E/Maternity Wards and 16% of all other types of A&Es have either been downgraded or closed. The Tories have overseen the worst A&E crisis in 11 years. Not since January 2004 have breaches of the A&E 4 hour target been as bad.
  • There are 477 fewer GP Surgeries, and a 4 fold increase in unfilled GP vacancies since 2010, partly caused by the £987mn real terms cut in GP funding. England’s GP to patient ratio has worsened by 3-4% as population increases. Of 27 EU Countries, the UK is ranked 24th for the number of working doctors it has per head of population (just 2.71 per 1,000 people).
  • They forced through a reorganisation of the NHS which has accelerated privatisation. Private Firms have been invited to bid for £18billion of NHS Contracts. Of contracts decided upon, private health have won 33%, 56% or 70% of those contracts depending on which statistic you place most stock in.
  • According to the UK Statistics Authority the government broke page 45 of their 2010 Manifesto to increase NHS Spending in real terms every year. According to the IFS, NHS Spending is falling 9.1% per patient from 2010 until 2018. The King’s Fund says the NHS is facing its tightest budget squeeze since 1979. And the Nuffield Trust said that NHS spending is falling steeply as a proportion of UK GDP.
  • Despite inheriting an NHS that enjoyed record satisfaction ratings, the coalition, by 2012, had delivered the largest every fall in patient satisfaction with the NHS.
  • A highly efficient NHS Direct has been shut down and replaced by a for-profit NHS111 service that botched its initial launch. 78% of the NHS111 staff who process 111 calls have no clinical expertise. This has caused all sorts of pressures, including additional admissions at A&E. It has been reported that there have been 22 deaths or serious injuries which were caused by failures in the launch of NHS 111.
  • S75 regulations, TTIP, and forced closures of A&Es take power away from the people and place it in the hands of unelected corporations. The government have insisted that healthcare will not be exempt from TTIP. They passed clauses to allow Jeremy Hunt to force NHS closures against the say of the local public, and diminish the court’s role in holding him accountable. He has also passed regulations to push commercial competition in the NHS much more forcefully. Needless to say, all of this is anti-democratic.
  • 9,746 Hospital Beds have been axed under the Tories. The UK now has one of the worst hospital bed to patient ratios in the world. 1,876 Mental Health NHS Beds have been cut and up to 4,000 Psychiatric Nurses have lost their job, and overall mental health provision has been cut by 25%.
  • The coalition ignored National Audit Office warnings that the Work Programme (which has twice been declared unlawful in a court of law) would fail and it failed to deliver jobs for 85%-91%% of participants according to the UK Statistics Authority. The Government’s £200 million Back to Work Scheme helps just 3% of the people it targeted said the National Audit Office.
  • After the coalition ordered private firms to toughen up the Work Capability Assessments, 158,000 were wrongly found fit to work , and had their decision overturned on appeal. 1,300 claimants died whilst being placed in the category to ready themselves for work. 68 claimants died while their appeal against the assessment finding them fit to work was still ongoing.

As I said, these are just some of the changes made by the coalition government; I detailed them here, because they have such an impact on ill people like us. I got these figures from ‘100 biggest failures of David Cameron’s Tories, May 2010 to Present’ and I would urge you to read the full list which gives so many details on detrimental changes to every aspect of our society along with links to evidence of where that information was attained.

Going Forward

David Cameron and his Conservative party now has a majority win and we know, for a fact that things are going to get worse. They have promised to make £12bn of welfare cuts. If they go ahead and do that, many people, not just the ill, will be hit hard. Things have gotten so bad for us in the last 5yrs and we are only assured that they will get worse. But we cannot give up; we have to keep fighting because for many of us it is a matter of survival. The most heart-breaking tweets that I read on Friday and over the weekend were written by ME sufferers who actually feared for their lives; they were not sure they would be able to survive another 5yrs. I have to admit that I am one of the lucky ones as I am not dependent on ESA or any disability benefits. I am well enough to be able to work on my writing, but my earnings are meagre and I survive on the generosity of family and friends. Not everyone has that luxury. I’ve been on Incapacity Benefit when I was truly too ill to work at all. The first sign that my symptoms let up, I went back to work and I had a major relapse which has resulted in me being unable to go out and get a ‘proper job’. I know dozens of ME sufferers and not a single one of them would take a penny from the state unless they really had no other option. More worrying are the changes to the NHS. The medical attention we require is not optional.

What Can We Do?

As ME sufferers we know all too well how our illness is regarded. We fight just to have ME recognised as a legitimate illness with doctors, let alone with those responsible for authorising benefits. People with more recognisable illnesses than ours are facing discrimination, and it doesn’t help that we’re expected to fight when most of us have our hands full just getting through the daily acts of feeding, washing and clothing ourselves. But we have no choice, we cannot allow anymore persecution. There are things that even the most ill sufferers can do.

Get and Provide Support

One of the worst aspects of this illness is the fact that we all feel extremely isolated as we do spend so much time in our homes alone. There is support available online. I have connected with hundreds of other sufferers on Twitter alone. This is important because it shows us that we are not alone. Personally, the anger I feel on my own, turns to complete outrage when I see so many people suffering. This might sound like a bad thing, but that outrage drives me to want to make a change. It shows me that I am part of a community of people and that with so many of us, there is something we can do. On my bad days, I really need that sense of community and understanding and I talk about what I am feeling and going through in large part in order to let others know that I understand what they are going through. So get and provide that sense of community and support by interacting with others as much as you can with other sufferers.

Get Your Story Out There

The media is very quick to make a huge show of the very small minority of benefit cheats and in How The Sun and Daily Mail Lie About CFS Cure Claims I looked at specific examples of how CFS was falsely portrayed in the press. We have to make our voices heard. We have to show the way that we are affected by our illness and the persecution of the state. We have to put faces to the horrors being I know, I know, we’re all ill and struggling, some of us so much more than others. But there are lots of ways that we can put a face to the horror and it is extremely important that we do. In fact tomorrow I am going to be publishing a more detailed list of things we can do to get our stories out there and the different actions we can take no matter what level the severity of symptoms.

Get Involved

Most of us can’t march through the streets with placards; we’re just not well enough! But there are others way to protest and fight for the things we want and need. You can sign up to organisations like ‘38 Degrees’ who are fighting to make the changes that we need. I have been a member for a while now and they have made significant changes. One campaign that I am particularly interested in is the Save Our NHS Campaign. You can choose to just sign petitions online, you can make phone calls for them if you feel well enough to do that, or if you or are a family member are more able, you can take part in organised protest marches. They also have details of local groups in your area that will be fighting to save your local NHS services. The e-mails they send out detail what needs doing where and even if you’re just able to send an e-mail to your MP, or share a story or campaign on social media to help get more people involved, you’re helping, as their past campaigns have shown.

Ask For Help

If you’re facing problems applying for benefits there are organisations that can help. I have friends who have successfully applied for or appealed unfair decisions for ESA and DLA using the guides and advice from Benefits and Work. It is not a free service (I have not used them personally, I do not work for them nor do I get paid for mentioning them here) and costs around £20 for a year’s subscription, but they do have a 7 day money back guarantee, so you can check them out and see if they can help. They’re an independent organisation and funded only by the subscriptions from their members. In their own words: “This complete independence means that Benefits and Work is free to publish information that makes it deeply unpopular with the Department for Work and Pensions, multinationals with an interest in benefits – such as Atos Healthcare, Unum Provident and Capita – and even other advice providers whose dependence on state and corporate funding may have made them reluctant to tell the whole truth.”

You don’t need to use this organisation, ask around online for what you need – there will definitely be at least one ME sufferer somewhere who has been through what you are going through and that will be able to offer a suggestion or advice.

It’s Not Over…

Yes, the election results were an awful blow and many of us have been licking our wounds these past few days. It would have been nice to even have a glimmer of hope that things would change but at least we know the beast we have to fight. We will fight because we really have no choice as the alternative is to die alone, poor, cold, ill and hungry. The elections may be over, but the fight to survive continues. I am the first person to admit that with our health struggles, even blinking hurts some days. We’re ME sufferers and we fight and struggle every day; we now have to translate that into some kind of positive change and we definitely will.

Can you think of anything else we can do to fight for our rights? Let us know in the comments below. Tomorrow I have a special post planned as it is ME Awareness Day, where I will tell you how you can help in the easiest and least taxing ways.

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Why I Hate Cyclists

Why I Hate Cyclists
I don’t like to use the word hate because it is a very strong word. But I am seriously starting to hate cyclists. I’ve lived in London my whole life and I’ve lived in the centre of London for four and a half years. I don’t drive and as a pedestrian not once have I been hit, almost been hit, or even felt threatened by a motorist here in the heart of crazy town. I wish I could say the same about cyclists. Just a couple of hours ago I walked to the post office on Earl’s Court Road and I was almost hit by a cyclist at a crossing. The same thing has happened a dozen or so times (that’s ONLY traffic light incidents) since I have lived here. So this is my rant about why I hate cyclists.

Yes cyclists, we know the fact that you choose pedal power over cars is much better for the environment and helps in taking the strain off the clogged up road ways and public transport in this great bustling city. There are campaigns to make the roads safer for you on your bikes so motorists don’t pose such a threat. But what about us pedestrians? Don’t we have a right to safety? It seems that no-one cares because a pedestrian hit by a person on a bike is not likely to die, whereas a cyclist hit by a car can often be lethal. But I’m an ME sufferer, and I live a limited life as it is and am usually in great pain. I have few opportunities to go out and walk and when I do I cherish that time out. If I am hit by a bike, recovering from that will take me so much more time than it would for a healthy person and pain-killiers and other medication can also have an adverse effect on my health. However, ill or healthy, all pedestrians have the right to be able to walk without fear of being mowed down by a person on a bike.

After the fourth time I had a cyclist almost careen into me at traffic lights I actually checked online to see if cyclists did not have to follow the red light rule. I spoke to one cyclist friend who said there are a few bad apples that make all the other cyclists look bad. Really? Then I must be the unluckiest pedestrian because I rarely go out and even more rarely have the chance to walk when I do, so how the hell do I seem to be running into so many kamikaze cyclists? These all seem to be experienced cyclists riding their own bikes as well.

However, thanks to that bike riding pillock Boris Johnson, pedestrians are not even safe on the pavement. I can’t tell you the number of times I’ve almost been ploughed down by an idiot on one of Boris’ Barclays’ bikes speeding along the pavement. These are normal pavements, and not shared lanes – the cyclists should not be there and yet they are and actually have the temerity to be galled by the pedestrians in their way. The most dangerous time for pedestrians on pavements seems to be during the morning rush hour especially when there’s a train or bus strike and inexperienced people rushing to get to work are trying one of Boris’ bikes.

Even my rare walks in the park are ruined by bloody cyclists. I walk down the shared pedestrian/cyclist lanes in fear, because I have had cyclist come speeding up behind me so many times. How the hell am I supposed to know they’re there? I walk on the side in a straight line, but that hasn’t saved me from being sworn at by a cyclist speeding by. Even worse is when there are clearly posted signs showing areas where cycling is not allowed and cyclists just ignore them. They want their own lanes and superhighways, well us pedestrians have our own lanes, it doesn’t stop a large number of cyclists from invading our space.

They say they’re not seen by motorists and yet they don’t seem to see ‘No Cycling’ signs, or red lights or pedestrians. They quote statistics about how no pedestrians have been killed by cyclists, but does that mean they can continue doing what they want? They say there are only a few cyclists who behave badly, yet I’ve had dozens of experiences and I’m not even out there every day or even once a week. Is it a wonder that there are a growing number of pedestrians like me who have just had enough and hate cyclists?

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Worst ME Treatments

Worst ME TreatmentsI had a lovely Twitter session this morning with a great group of ME sufferers that literally had me howling with laughter. One Australian Twitter user asked “After the serious #SEID IOM discussion, I need some Friday night levity. What’s the most ridiculous treatment someone recommended to you?” and it got me thinking of the worst ME treatments that I’ve tried and some of the even worse things people suggested but I had the good sense not to try. So here I will share some of these with you and I promise, if you’ve tried these and found help or even if you’ve tried even more ridiculous ‘treatments’ I promise there is absolutely no judgement. I know this illness and in our desperation to get better, we will try almost anything and also some people find relief where others do not.

Most of the ones I tried in the following list were in the first few months after I was diagnosed. I didn’t know anything about ME, but I had no intention of accepting that I was ill and wanted to get on with my life. I went away for 4 months and tried many alternative treatments, some of which I had never even heard of and I knew nothing about.

Physiotherapy

So this seems like a rather conventional and good treatment, especially if you have mobility issues. This was something my rheumatologist recommended about a year before I was actually diagnosed with ME, so I can’t blame anyone for anything here. The physiotherapist could see that anything I did was causing me a lot of pain and she said my joints would heat up as if I had RA, but I did not have that. She also said she didn’t think physiotherapy was right for me as it was becoming apparent the issue was neurological and she would need to speak to my specialist and she’d let me know. Good, right?

Not really, because she apparently forgot all about this and suggested therapy in the hydrotherapy pool. So I went back a week later with my swimming costume and climbed into the pool with my physiotherapist and another patient at the other end of the pool. She told me to move my head from side to side, to loosen up my neck while she gave the other patient instructions. The next thing I knew I woke up on a metal lift as I was being lifted out of the pool – I had passed out. No more physiotherapy in or out of the pool after that.

Homeopathy

There may be shock and horror at me having included this here, as so many people swear by it, but after my experiences with Homeopathy and subsequent research, this, for me at least, definitely belongs on this list. This was the first alternative treatment I tried because my friend said she always used it instead of allopathic medicine.

The homeopath that I saw was a lovely lady, but her little sugar balls did absolutely nothing to help me! All I managed to do was make myself even more ill by going to her office every few days and I spent a fortune.

Anyone who is considering trying Homeopathy, please watch the following clip where Ben Goldacre very succinctly talks about it.

Reflexology

Another one that I know many people find helpful, but it didn’t help me. I will admit that some people may find someone pressing points on their feet relaxing and thus this ‘treatment’ acts as a way to de-stress. But as a cure? It did not have any positive effect on me, except lightening my wallet, and that’s hardly positive. I was bedridden for 10 days after the session and the practitioner claimed this was my body detoxifying. I now know it was me over-doing it by talking, interacting and pushing myself to do more when I should have been resting.

I have to admit that I don’t like anyone touching my feet (I was once compared to Eddie Murphy’s character in ‘Boomerang’ for my issues with feet) so I didn’t even find the treatment at all relaxing.

Ginger

Bear with me a moment before we actually get to the gingery part of this treatment. This one was thanks to a yoga teacher who decided she could cure ME. The day she came around to see me, I was laid out flat and having problems breathing. So the deep breathing exercise she put me through nearly knocked me out. Let alone the actual yoga exercises she tried to get me to do. These were nothing drastic; I got to do them lying down, but I was so fatigued and in so much pain anyway, that just moving my head around caused serious pain and I burst into tears. I was told I was not being positive and had to push through the pain.

She asked me about what I ate and when she suggested a few things, I told her I had an intolerance to them. She said that was nonsense as there was no such thing as an allergy or intolerance. If my body was reacting I needed more of that food type, not less. This was why she suggested I needed to rub myself with ginger juice from head to toe every day.

I’m ashamed to say I actually did it. By that time I was so worried about appearing ‘negative’ if I refused, that I was afraid to protest anymore. Wow did that that ginger burn! After 3 days I had to stop because I developed a rash all over my body. I’m more confident about myself and know more about the illness now.

The Lightning Process

Right, so we’re moving into the territory of treatments that people recommended but that I never tried. I looked into this one myself after seeing it suggested in a few ME forums, but I didn’t try it at the time simply because I didn’t have the almost £600 that it cost. But I did go back and look at it again when my mum offered to give me a loan.

What I don’t like about this treatment is the purely psychological approach that it takes with an illness that is physical. I’d also read feedback from people who had tried it and who said they were blamed quite strongly by their practitioners when the treatment did not work. A friend and fellow ME sufferer did try the treatment and she said it helped her. She also gave me copies of all the paperwork she had been given on the course as a way to encourage me to try it. Unfortunately seeing these actually increased my doubts about this so-called treatment.

Let me be clear; I think psychological approaches can help us to have a better understanding of our situation and help us to deal with the stresses of being ill, but they are not a cure. As someone who had previously studied NLP and been a very positive person, but who had still managed to get ill, I was and continue to be very sceptical.

If you’re considering this treatment, please do your research; there are some very negative reviews from people who have actually tried it and some very good justifications for why it could not work. This article on the ME Association site has some varied views. One person states “IF THE Lightning Process worked for Ms Gibson, she never had ME in the first place. Her understanding isn’t congruent with 60 years of biomedical research into what the World Health Organisation defines as a neurological disease.” I wholeheartedly agree.

Drinking Cow Urine:

So I wanted to end with the most bizarre and yes folks, you read that right, someone once suggested that I drink cow urine as a cure for ME. The man who suggested it (a family friend – or at least he used to be before that suggestion) even offered to give me a bottle of the stuff that he just happened to have lying about. Now, I should add that he is Indian, so with the cow being a sacred animal in India, this may be connected to some religious belief. But surely a cup of milk would have sufficed, why urine? An option for those that are lactose intolerant, perhaps?

Needless to say this was one I did not consider let alone try! I talk about this one a little more in the video below:

BE SAFE FOLKS – WHAT WORKS FOR ONE PERSON MAY NOT WORK FOR ANOTHER. PLEASE SPEAK TO YOUR DOCTOR BEFORE DECIDING AGAINST ANY TREATMENT BASED ON MY OPINIONS HERE.

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Birthdays, Juggling and ME

Birthdays, Juggling and ME

It may be a strange thing to say on a blog where I write about chronic illness, but I don’t really think about being ill or the effects it has on my daily life. Most of the time I practice mindfulness and I try to live in the moment. There are a couple of times a year when this is not so. The first is 26th August, the anniversary of the day I became ill, and the other is today, my birthday. It’s normal for my birthdays to be a time of reflection for me, and this year is no different. But the flavour of that reflection depends very much on what is happening at that time in my life. Some years, especially in the beginning of this illness, I was angry and depressed that I couldn’t celebrate with friends or go out for my birthday as I had in the past. In later years I was just glad I survived another year. This year is different.

I’ve been very ill for the past fortnight and I’ve been really struggling. The physical symptoms are nothing I have not endured before and I know it will pass. However, this suffering is made all the worse because it is payment for the socialising I did over the Christmas holidays. I didn’t even do that much; I spent time with my family and my favourite cousins and only left the house on 3 occasions. I loved every minute, but it cost me dearly. So the past few days I’ve been thinking of loved ones, especially the ones I have lost. Today is the second anniversary of the passing of Uncle Giani and I find myself remembering him and all the other people that have been lost along the way.

As remarkable as it may seem, this illness has helped; it has forced me to simplify my life. There is no more ‘should’ because I no longer feel like I have to do anything I don’t want to. No longer do I feel the pressure of ridiculous obligations. I now only do what I want to and I only spend my precious time and energy with those that I love and I’m totally indifferent to everyone and anyone else. But how much time and energy do I have even for those that I love? My dad just called from his holiday home in Goa to wish me a happy birthday and I could barely speak. This is what weighs on me; the fear that I can’t even stay in touch with my loved ones because of my health.

I’m 39 years old. 30 bloody 9! This is the last year of my thirties and it’s not so much the age that affects me, but the fact that I’ve been performing this ME juggling act since my mid-twenties. Keeping those balls in the air gets harder and harder and this is not always because of deteriorating health. I may have been in a kind of stasis for over 13 years, but the world around me has been speeding on. This means that more and more balls are added all the time. My nephew is 16 months old and I want to see him more, there are other loved ones that I want to see, also I have so many more projects that I want to complete, but I juggle and I juggle, always trying to make sure that the most fragile ball, the one of my health, stays aloft, even if I have to let others fall.

I’ve come to accept that there are things I just cannot do. I was once an avid traveller, but I no longer even have the desire to travel. The same goes for so many other things that I once wished I could do. But how does one give up the desire to spend time with loved ones when life is so short? Even if I could, I don’t want to. If I get one wish for my birthday, it is the hope that the ‘health’ ball becomes less fragile before my next birthday.

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Ill or Not, We Are All Misunderstood

Ill or Not, We Are All Misunderstood

Last week I wrote about The Fault in Our Stars but the post was more a rant about how misunderstood people with illness are, not to mention how much we underestimate the intelligence of teenagers. Well, it turns out that I have more to say about the being ill part (shocking, I know). I’ve been thinking about how people with illnesses like ME strive so hard to make it understood that they have a real illness, and yet even when people do grasp that truth, we’re still totally misunderstood.

If you’re an ME sufferer, have you ever had someone ask you about your illness or what you do all day, only for that person to respond with “I would die if I had to live like that”. Yeah, I know, it sounds like an unbelievably inconsiderate thing to say, but it is amazing how many times I have had that response from people, and I’m not the only one.

When I first became ill, I was very angry. Why did people not understand? But the truth is that people cannot understand, and over a decade later, I’m glad they can’t as I wouldn’t wish this hell on anyone. Just about everyone is limited by their own preconceived notions about a given situation. We live in the twenty-first century, and there is a lot of faith in medicines and doctors in general. I can understand that. If someone has not spent vast amounts of time in doctor’s surgeries and hospitals, one can be forgiven for thinking that in this modern era there is a cure or treatment for everything and all illnesses are understood and treated well. So when an ME sufferer shows up with this crazy and mostly invisible illness it can be difficult to understand. I didn’t understand it myself when I first became ill, and I was convinced if I just got a diagnosis, I’d be given a prescription and all would be well again. Oh, how naïve I was.

Then when it’s established that you do actually have an illness, those closest to you start to see how drastically your life has changed. It’s traumatic enough when you’re ill and have to stop working, socialising and in some cases even leaving your bed. Of course a healthy person would recoil from the thought of having to live like that. I can totally see how it is a kind of living death, because…newsflash…that’s exactly how so many ME sufferers feel, at least at the beginning (and maybe some of the middle). However, most ill people that I know establish a new life for themselves within the new parameters that the illness has created.

Before I became ill, I always wanted to write, but I never had the time to do it. I may be foggier and slower now than when I was healthy, but I do write. Among my ill friends I have a published author, a very accomplished knitter, someone who is about to propose to her girlfriend (since I wrote this, she proposed and they’re getting married!) and a woman who runs an internet business from her bed, and that’s just off the top of my head. Ill people don’t spend all day every day lamenting their circumstances. Of course we all have bad days and even weeks, and anger and depression can make an appearance then, but isn’t that true for most healthy people too?

I’ve noticed that when people first get ill, they’re more likely to talk about their illness. I know I did and I even know why I did it. I felt like I had to convince people that I was really ill and how serious the illness really was, because I felt so guilty about not being able to be there for social events or even just a chat, like I used to be. Now, I’ve made my peace with it, and I even understand why people react the way they do, and just about every person with a chronic illness has reached or will reach this same awareness and serenity. I know that at some time or the other, people with an illness feel misunderstood, but we can often misunderstand healthy people too, who are limited in their understanding by the very fact that they have not had a chronic illness.

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Christmas Humour

Santa Pug and other Christmas HumourRight about now, with two weeks left until Christmas, I’m sure there are more than a few frazzled folk out there. I’ve not had to send any cards or buy any more presents and I’ve been more stressed this year than usual! I guess it’s the reason I’ve been working so hard lately. But yesterday I decided, I’d had enough of the stress and I was looking at some funny Christmas pics. I can’t be the only one feeling like this so I decided to share some of the Christmas humour with you. Put down that wrapping paper, stop searching Amazon and just take a break for a minute! Please note none of the images are mine but you’ll find the credit and terms of use links at the end.

Christmas Credit Crunch and other Christmas Humour

Occupy North Pole and other Christmas HumourWe all spend too much at Christmas (yep, even people like me) but I loved ‘The Credit Crunch hits the North Pole’ especially when I read the story behind it! The illustrator sent this out as a Christmas e-card to his friends and family. I guess the implied message was “If you’re wondering what happened to your Christmas presents, things in the North Pole are a mess right now!” Then again I guess they realised that when they received an e-card.

Original Bad Santa and other Christmas HumourI hope there aren’t any children reading (who am I kidding, they’re all on YouTube, not on some old fogey’s blog).

I’m sure Santa’s reaction to any kind of ‘Occupy’ scenario in the North Pole will be this. Not that much different to the reaction from our own governing bodies. However, I have to admit to having at least some sympathy for the man in the red suit! Now I’m thinking that I called him Santa…growing up it was always Father Christmas, not Santa. Does anyone in the UK use the name Father Christmas anymore? I’ll have to ask my sister how she refers to him when she tells that old story to her son.

A Christmas Story and other Christmas HumourI’m not sure if this kid is happy to have received his gift or like the majority of people totally bummed out. Maybe it could be used as some kind of Rorschach test and your answer would reveal something deep about your personality. All I know is that it made me fear my nephew’s reaction to the gift I got him. After his reaction to his birthday gift, I guess this kid’s enigmatic look is something to hope for.

Last Minute Xmas Gifts and other Christmas Humour

Well, I better let you get back to the buying or you’ll be in the same state as this guy!

Image Credits and Terms of Use:
Santa Pug;
The Credit Crunch hits the North Pole;
Occupy North Pole;
Original Bad Santa;
A Christmas Story;
Last Minute Xmas Gifts.

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A Paw to Lead You Through the Darkness

How a pet can be the best friend and the best medicine when you have a chronic illness.

How a pet can be the best friend and the best medicine when you have a chronic illness.

I became ill in August 2001 and I was diagnosed in January 2005. I spent the next nine months after diagnosis trying every alternative therapy known to try and ‘cure’ myself. No way could I be ill! In 2005 I went away for four months to try these therapies and when I came back home in October, my family had adopted a German Shepherd puppy. This is the story of how that little puppy and how he became my saviour during the darkest time of my life.

My family had a German Shepherd dog before. My sisters and I grew up with Jack, who was the best friend any children could have. He passed in 1999 and we’ve all missed him every day since then. After Jack, we often spoke of getting another dog, but with all of us grown up and in and out of the family home, we didn’t think it was a good idea. Also, one never forgets the pain of losing a dog, and that in itself can make you think twice about getting another one. But as I mentioned before, in 2005 while I was away, my sister heard about a German Shepherd puppy that was up for sale. The family that had bought him had had second thoughts about owning a dog, as so often happens. So, my sisters went to visit the family and as soon as they saw the puppy abandoned in the garden without any water, they brought him straight home.

My furry saviourHis first human family had named him Jimmy, but that was not a suitable name for this boisterous puppy. My sister decided Masti (meaning ‘fun’ or ‘mischief’ in hindi) was a much more suitable name. Masti was very different from Jack. Where good old Jack had always been a sensible, giving dog, Masti was a brat. This had a lot to do with the fact that he was very spoiled by the whole family in response to having a dog after so long. So, when I met Masti, I was not impressed and missed Jack more than ever. I was very ill at the time and this crazy puppy just seemed more trouble than he was worth. That soon changed though.

He became my companion, my saviour and at times my reason to live. I may have been confined to the house or even the sofa at times, while everyone else went out to work, but I was no longer alone. I had a new funny friend to keep me company. I’d wake up from naps and there’d be this big furry face hovering over me, while his tail thumped away; an indication of how happy he was that I was awake. Very soon I could have full conversations with Masti, and one of the best things about German Shepherds is their extraordinary intelligence. He knew the names of all his toys (‘Burger’, ‘Piggy’, ‘Tree’, ‘Ball’) and one of his favourite games was one that even I could play with him, even though I was ill. I would hide a toy (usually Piggy) in the room, while Masti was instructed to wait outside and then he’d come running in, when I called “Where’s Piggy?”

Masti kept me sane when I felt I would go insane with the effort of being ill. He was my friend, when I had no others. No matter how little energy I had, even if I could not speak, it was enough for him. Masti was also much more tactile than Jack. In fact, we often thought that Masti did not realise he was a great big German Shepherd, and instead believing himself to be a lap dog with how much he loved cuddles. After the alternative therapies it was a good year before I felt able to deal with being ill. I learned about the illness, started managing my own health and I ended the grieving of the pre-ME me. But it was a dark year full of despair and depression. I think I may have ended my life during that time, had it not been for Masti. He truly saved me in every way a person can be saved.

A Furry Paw to Lead You Through the Darkness

In 2010, my health improved enough to allow me to move out into my own place. The hardest part was being without Masti and he did not make it easy when I went back to visit. He always seemed to know when it was coming up to time for me to leave. He followed me around and watched me with a sad questioning look “Leaving again? But you just got here.”

As you can probably tell by the past tense, this story does not have a happy ending. On Monday we had to make the awful decision that every pet owner dreads, and call the vet to have Masti euthanized. A month ago he became very unwell and the vets told us that he had tumours growing and there was nothing that could be done and they gave us a ball park figure of two months. The news was devastating. I think I cried for 24hrs straight when I found out and I went to see him. What really hurt me was that he had helped me so much when I was ill and had even been a reason for me to live at times, yet there was nothing that I could do for him now that he was ill. But this past weekend he stopped eating and just stopped being the Masti we knew. I saw him on Wednesday last week and he was extra sweet and gave me more cuddles than he ever had and I think I knew then that he was saying goodbye. Masti was nine years old, but he never lost that boisterousness he’d had as a puppy, so it was heartbreaking to see him so fatigued and lifeless on Monday. The vet came to the house and we were all with him at the end. He was brave and beautiful right until the end and I will never forget him. He was a true angel that came into my life when I needed him most.

Have you had a furry angel help you during the dark times of chronic illness?

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Fear of Dentists

Fear of Dentists

I have a devastating fear of dentists. I happen to live with someone who not only goes for the recommended check-up every six months, oh no, he CHOOSES to go every three months. This is not because there is anything wrong with his teeth, but because he likes to have his teeth checked and cleaned regularly. That is such an alien concept to me; I can’t even imagine it because I am absolutely terrified of dentists. I know most people do not like to visit the dentist, but it is much more than that for me. Even writing this is making me feel extremely uneasy. I love looking for and adapting suitable images for articles, but I could not even bring myself to look for images of anything to do with dentists, hence the safer option of a cartoony tooth and a quote. I can’t watch anyone having any kind of dental experience on TV and the sound of the drill is agonising.

My fear is in response to an experience I had when I was 15 years old. Before that, my visits to the dentist were just mildly uncomfortable and a little painful (my dentist did not believe in anaesthetics to numb the area of the mouth being worked on). Then my dentist told me that one of my incisors had not grown out, but was lying across the top of my mouth and indeed, there was a bump in the roof of my mouth. He said he could remove it under local anaesthetic or I could have it done under general anaesthetic in a hospital. I absolutely did not like the idea of having my mouth cut open while I was awake, and neither did my mother. My mother knew a dental nurse, whom she consulted about the procedure. She advised my mum that it was probably best for me to have it done under general anaesthetic as it may be quite traumatic due to the amount of time it would take. My dentist owned his practice, and the nurse advised that this kind of procedure would be a big earner for him, so it was little surprise he would want to do it in house.

The dentist was not at all pleased to learn this and he tried to dissuade us, saying that he could book me in and have everything done within the next fortnight, whereas it could take up to a year to get seen by the hospital. We stuck by our decision, despite his forceful protests. I went into hospital and had my procedure within a few weeks. When I went to see the dentist the next time, he laughed and said “Still waiting for that hospital appointment?” as soon as I walked in. I took great satisfaction in telling him that I had already had the procedure, and I am sure that what ensued was punishment for this flippant comment. I needed a filling and when I was in the chair, he began drilling my tooth, but it really hurt, more than usual. I began to moan in pain and he told the nurse to hold me down, which she did (she was his wife) and he continued drilling saying “What? So now you want a general anaesthetic for a filling?”

I was in complete shock when I left that day and a complete mess. That one incident has affected me very badly and I wish it hadn’t. I have this horrible fear of anything going near my mouth; I had to have a gastroscopy in 2003 and when they were explaining the procedure to me, I completely freaked out and had a full on panic attack because I couldn’t handle the thought that something would be put down my throat. Now there is the chance that I have to go for another gastroscopy, so I find myself thinking back to where this all began.

Four years ago, I decided to do something about it; I wanted to confront my fears. I went to see a dentist after eighteen years and it was nightmarish, but the dentist was lovely. I was referred to a specialist and I was sedated for the check up and cleaning etc. I’m not scared of dentists, I guess but I’m still terrified of anything going near my mouth. It’s a kind of claustrophobia; like I can’t breathe and will suffocate. Also, it makes me feel so vulnerable. My biggest fear is that something will happen and I will need emergency dental treatment. So far though, my teeth have not let me down. I just hope it stays that way. But I have no idea how I will cope with another gastroscopy.

How do you feel about dentists? Have you ever had a similar experience?

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Haunting Renewed: ME/CFS Ghost Update

ME/CFS Ghost Blog UpdateThere have been so many changes lately and some related to The ME/CFS Ghost. Do you ever feel that even though you’re ill and nothing really happens in your life, time goes so fast and you’re always ‘busy’? I feel like that even when I’ve spent more time in bed than out. It is the same with these changes; physically and practically, I guess they’re nothing major. But for me, they’re very much all consuming! I guess that is the way when health and energy are in short supply.

Of the changes affecting The ME/CFS Ghost (I’ve got to find a shorter way to convey that! TMCG?) the main one is that it now has a new home! Yep, it is all set up on its very own site and no longer on Blogspot. I did this because I realised that I had been neglecting TMCG and not really treating it as a real blog, like I do with the other sites I write on. Yet the subjects I write about here are perhaps more important than the others put together! Also, it felt right to head out on my own and try something a little differently.

As I mentioned the other sites I write for, I would like to say that I now no longer write for any sites but my own. If you’ve followed my previous posts, you’ll know that I sometimes wrote on sites like Squidoo. I had less and less time and energy to write on those sites and had begun to concentrate more on my own sites anyway. However, the drastic changes made on some of these other sites, and the fact that from October 2014, Squidoo will no longer exist, I’ve decided to delete all my content from them and go it alone.

What this will also hopefully mean is that I will be writing more often on here, health allowing of course. But the worst of the summer symptoms seem to be abating, so I am hopeful that I’ll be getting more done. I hope you like the ‘new’ site. Today marks the beginning of a new The ME/CFS Ghost.

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