Why is sorry the hardest word for me?

This has been another hard post to write and its been lurking in the draft section of my blog for a few weeks now. I haven’t wanted to offend people that have genuinely reached out to me and stayed in contact. This post isnt about people who stay in contact with me, it’s a post, well you will work it out from what I’ve written what sort of people its about! (Especially if you have been chronically sick for a while).

Since I’ve become sick a lot of people (and I mean a lot of people) have contacted me to say “Sorry”, they’re “sorry to hear my health is so bad”, “sorry they didn’t know I was so ill”. Its very nice of them to contact me and say that they are sorry however I find it very difficult to respond. I mean what are you supposed to say? Being chronically sick doesn’t come with any sort of handbook, faced with a “I’m sorry” leaves me desperately short of appropriate responses.

I really dont want to sound ungrateful, its very kind of people that I’m not in everyday contact with, to go out of their way to contact me and tell me how sorry they are that I am ill. So far so good, however I have found that once I’ve responded to their message, that’s usually the end of any direct contact they will have with me. That’s the part that leaves me scratching my head and wondering why. “Im sorry” seems to have turned into code for “I can’t deal with chronic illness, I’m running away now!”

It leaves me perplexed as to what purpose it served to send me this message, if that is all you’re going to manage? Again I don’t want to sound ungrateful and unreasonable but why bother with all the fuss of making contact, if you have no other agenda than to ease your own conscience? I suppose having continued contact with me might be seen as daunting, as I now have a chronic illness and that my conversational skills must solely revolve around that topic. However if you think that you really dont know me. Yes having a chronic illness has changed me but it has changed me for the better not the worse. See the linked post below for a fuller explanation!

http://themyastheniakid.blogspot.co.uk/2014/03/what-makes-me-happy_24.html

I suppose other situations also seem to warrant this quick message approach such as a bereavement / divorce etc. Unless you’ve been in this situation you probably think I seem like an ungracious spoilt _____ ( you fill in the blank!) but when you live in social isolation it can be very hard to accept that you are just a fleeting thought for someone. Once messaged you can once again be out of sight, out of mind.

I do have massive problems with the word sorry, it makes me feel that the person thinks, that they are in some way to blame for me being sick, which of course isn’t true and isn’t what they meant at all. I just wish I knew why their messages make me so uncomfortable and if I could just come up with a better response than “thank you for your kind words” or my other tactic of minimising my health problems. That’s probably a very British trait I have innately acquired, you know not wanting to cause a fuss!

Or is my aversion to the sorry message more due to the fact that I know thats as far as it will go? I will receive their message of sorry only for them to disappear into the ether again. Even when I first became ill I found the “sorry” conversation a difficult one to deal with. I dont want people to feel sorry for me, I want them to understand what life is like for me. To appreciate that yes my life is dramatically different to what it once was but essentially I am the same person, just with vastly different life experiences. So perhaps its a mixture of not knowing how to respond to the message and knowing that its all our contact will entail, now that I’m seven years down the line with this illness?

I sometimes wonder if I have become too cynical when dealing with others? So many people disappeared from my life when I had to give up work that I am now very cautious when new people come into my sphere. I have become a lot tougher and sometimes less forgiving about the way people treat me. I think its a kind of self preservation thing, I will save myself the pain and frustration of being badly let down again. For further information on this please see my blog post entitled Friends and Chronic illness.

http://themyastheniakid.blogspot.co.uk/2014/04/friends-and-chronic-illness-or-life.html

It may amaze some of you (especially with the fact that I write this blog) that I am incredibly uncomfortable being in the spotlight. In a group of people I am always the loudest and the one trying to be the funniest but the attention isn’t directly focused on me, my words are what is captivating the audience. My health problems or anything personal are not in the spotlight then, I am just Rachel. I sometimes wonder if I regard my ill health as some kind of personal failing never to be mentioned in company? Is that why the sorry messages are so hard for me to accept?

I am not only uncomfortable with the messages about how “sorry” people are but even worse are the ones that say “you’re so brave” or “I don’t know how I would cope in your position” I’ve even had the unfortunately worded phrase “I would kill myself, if I had to lead your life” said to me. How on earth am I supposed to respond to that ? I mean telling me that you would rather commit suicide than live my life makes me feel like you think my quality of life is worthless! My life is far from worthless. I do understand, well hope really, that it isn’t what you meant. What you meant to say was “Rach I don’t know how you do it, I don’t know if I possess the inner resources to cope with everything that’s thrown at you”, however to be fair to them I would still probably feel uncomfortable with that one as well but it does sound better!

I did however accept a message of “you’re so brave” last week, because for the first time ever I actually felt like I deserved that acknowledgement. I was home from the hospital and I was injecting octreotide without supervision. I was hand shakingly nervous and thats not a great place to be when you are trying to get up the gumption to stick yourself with a hypodermic needle! When I received the message I had just injected on my own, hubby was at work. The message made my day because I felt brave. I felt I warranted the praise. I wasn’t just living my life as I normally do, I was doing something above and beyond that.

Please can someone tell me how are I am  supposed to respond to the sorry messages and the I don’t know how you cope messages? Because I really don’t know how to.  I cope because I have to! I figured out a very long time ago that I could waste the rest of my life wailing about how unfair it is and why me? and I decided that I wasn’t going down that path. Yes I still have days where I do wobble but I try to remind myself that whatever is making me wobble is transient.

On the whole I want to believe that people are well meaning. The sorry messages are sent to let me know that they have been thinking about me. The other type of comments I will regard as badly executed compliments. Even if they both leave me feeling uncomfortable and at a loss for words.

The world of chronic illness would be so much easier if there was a handbook that explained how to respond to these situations.

My boy – Frankie

Hello and welcome!

If youve suddenly discovered this blog on wordpress.com dont be alarmed! It has existed on Blogger since 2008 at http://www.themyastheniakid.blogspot.co.uk. I decided over the last few days to blog on dual platforms to create a wider audience as I am now blogging more seriously and it gives me something to do.

I am still finding my way around wordpress so please bear with me whilst I get used to the set up. All my blog posts that appear on Blogger are here also – except this one.

I hope you enjoy my blog about the crazy world of dysautonomia / PoTs / autonomic nervous system dysfunction/ Ehlers Danlos syndrome Hypermobility type and all the other myriad of conditions I have been diagnosed with. The blogs name comes from the fact I was initially diagnosed with Myasthenia Gravis back in 2007 and depending on which doctor I see its still in the mix.

Enjoy!

Octreotide Trial one week on.

Sorting my syringes for the day.

I’m one week into my octreotide trial and things have not  been going swimmingly. Over the course of the last week I have been developing some nasty side effects of the gastrointestinal kind. Last night I was awoken at 230am and over the course of the next 6 hours I barely left the bathroom.

Over the last week I have been managing to inject myself 2-3 times a day. I was struggling with it initially, not because of having to inject myself but the issue with eating regularly. I learnt years ago to avoid post prandial hypotension to avoid where at all possible eating lunch. At school I would struggle to stay awake after lunch. At university I would regularly fall asleep in the lecture theatre and snore, loudly. This issue followed me into my workplace and to avoid falling asleep in front of a room full of new employees, avoiding lunch was the only thing I could do.

My post prandial hypotension could almost be described as a kind of narcolepsy, I can’t keep myself awake. I have no choice in the matter but to go to sleep. Fighting it makes me feel extremely ill. My eyes roll to the back of my head, my speech becomes slurred and I can not put off the inevitable, I go to sleep. My blood pressure drops so low I awaken confused, not knowing where I am. Nine times out of ten I will initially believe I am back at my parents house, a place I haven’t lived in since 1996. My confusion can last a few minutes to an hour and it is terrifying. Out of all the horrid symptoms I endure this is the worst. It will reduce to me to tears on a regular basis.

As you can imagine, after last night, I was deflated ( pardon the pun) , exhausted and in pain. However due to the amazing results I had experienced I wasn’t ready to throw the towel in just yet. I was wobbling psychologically and feeling a bit sorry for myself but I was determined to carry on.

After what can only be described as a hideous night, out of the blue my consultant rang me to find out how I was doing and to make arrangements for the tilt table test I was due to have on Tuesday 22nd April. On hearing of the disastrous night I had endured, he decided a tilt table test wasn’t going to be a good idea. I have been advised to halt the injections today (Monday 21st April) and resume tomorrow starting off again with one injection a day. I am to continue with one injection a day until I ring his secretary on Friday and let her know how I am doing and a decision will be made from there.

Some of my cyber friends are on this medication for PoTS alone and have been advised not to take it at meal times as there is an increased risk of side effects – wind (gas) , bloating, diarrhea, constipation and nausea. With post prandial hypotension the whole point is I take it with meals. However I am suffering with all but one of the side effects – constipation. How last night I wished that I was suffering with constipation!

I will see how the week goes and maybe if there is no joy I will use the drug to treat my PoTS rather than post prandial hypotension. As the drug works so well I am happy to currently persevere as long as I don’t have a repeat of last night.

It maybe that I can only tolerate one injection a day without incurring the wrath of the octreotide god. If thats the case my post prandial hypotension is always at its worst at lunch time for some reason. If I could obliterate that symptoms with little or no side effects that would be an enormous leap forward.

Bank holiday Picture Blog

I thought as my Monday blog post will clash with Easter Monday I would still post but do one based on pictures!

This is my very crumpled hospital bed and was my home for 24 very long hours last week. I was very lucky that I had a side room and wasn’t on a ward. It meant I could keep my digital radio on all the time without annoying anyone! The only down side was there was no ensuite with this room.

Trying a moody shot. Me bored in bed!

This was the other side of my room, the chair was unfortunately as uncomfortable as the bed and I couldn’t get any respite from the neuropathic pain in my left leg. I had a little note book on me at all times so I could jot down any ideas for future blog posts and anything that the medical staff needed me to remember!

This is me on Tuesday morning, again playing around with my phone due to sheer boredom. I felt awful as my pain was off the chart and I hadn’t slept very well. It would be true to say I wasn’t a very happy bunny at all when I took this photo!

This is my favourite picture that I took in all the time I was in hospital. As you can see I’ve been playing around with the special effects as its all new to me.

I hope everyone has had a nice time over the bank holiday weekend!

Octreotide trial, the results!

On Monday 14th April I made the call that I had been a little apprehensive to make, I rang the ward to see if there was a bed available for my octreotide trial. The answer was a resounding yes and then the nerves kicked in big time, up until then I had been relatively calm.

The disasters of my stay will be fodder for a future blog post (s) when I feel less like I’ve had a bus and then several cars run over me. However for those of you interested in the results I thought I would do a quick update today (Wednesday 16th April) ready to be published on  Thursday 17th April 2014.

I managed to get home a little after 24 hours on the ward and by this point I had tolerated three injections of 25mcg, one of which I had done myself. The injections are subcutaneous so theres no finding a vein which would be a complete disaster for me. If a hospital phlebotomist has problems and they take blood all day everyday theres no hope for an amateur like me!

The injections need to be done in conjunction with a meal as my symptoms are at their worst in the two hours after I eat. The first injection stung a little, the needle going in doesn’t hurt its the octreotide going in that does. However I’ve had some great advice from fellow users courtesy of facebook and know that it is best to get the dose up to room temperature before injecting it.

With the first injection given to me on Monday evening, I still had a little episode after eating where I went to sleep and then woke up confused thinking I was back at my parents house in a completely different city. The confusion didn’t last long and I came out of it pretty quickly.

My second injection took place at around 7am on Tuesday morning and I had a few slices of toast to see how my body coped with another carbohydrate heavy meal ( it really doesn’t matter what I eat, protein or carbs I will crash all the same but carbs are the worst). After 45 minutes I had some tachycardia but it wasn’t as forceful as normal (by forceful I mean it didn’t feel like my heart was trying to break out of my chest. That’s how it normally feels after I’ve eaten) I did have a little sleep of 20 minutes but I had, had such an awful nights sleep that at some point during the day a nap would have been called for.

At around 930am my consultant popped in to find out how I was doing. I really don’t like being in hospital and the usual confident young(ish) woman that he has got to know over the last few years had vanished. Before him was a quivering wreck that was close to tears with the stress of it all. Hospitals / doctors / anything remotely medical makes me extremely anxious these days due to horrific past experiences, so I think he was genuinely shocked at the state I was in. Having told me the day before that I was going to be kept in all week and I had managed to bargain him down to Wednesday morning, he decided that I could go home later on that day provided I suffered no side effects from lunch times injection and that I did the injection myself!

At around 13:30 I did my very first injection, having been talked through it by the nurse. All went well until she forgot to tell me that the skin that I had pinched to put the injection in, had to be let go of before removing the needle – otherwise what you have injected oozes out! I haven’t made that mistake again!

I’ve suffered no  hideous side effects from the octreotide. All I have experienced so far is a strange metallic / salty taste around 20 minutes after injecting, a strange burning feeling in my mouth and throat, a minuscule amount of nausea and an empty feeling in my stomach. None of these symptoms are so dire that it would want to make me discontinue the medication.

Even on the tiny dose that I have taken there have been improvements. Today I’ve had no tachycardia after eating, on checking my blood pressure it was a healthy 115/80 with a pulse of 68. I never have a normal blood pressure unless I am in a lot of pain or I am incredibly stressed and my pulse never goes below 80 beats per minute. It usually resides in the 90 -100 zone, so a low pulse rate is incredible. I also took a shower whilst the octreotide was still in my system ( it leaves the body after 90 minutes) and I had no blood pooling in my legs. Normally when I shower they are a livid pulsating purple colour and at the same time my internal organs feel like they are falling out of my body onto the shower tray beneath me.

However I need to stress this isn’t a cure, for want of a better word my autonomic nervous system is screwed and my condition is worsening. I will only improve whilst the drug is active in my system. There is a slow release injectable version of this drug but I am in the trial phase at the moment and that won’t be considered until my consultant and I are sure that the drug is improving my condition.

As soon as the drug wears off my heart rate soars and my blood pressure plummets. For the 90 minutes whilst its working, so far I haven’t noticed any change in energy levels but then I have a hospital visit to get over! So the injection currently improves my post prandial hypotension and tachycardia for 90 minutes three times a day. The rest of the time I still have tachycardia, orthostatic intolerance and painful joints due to the Ehlers Danlos Syndrome.

I know that this is a much shorter post than normal for me but I am exhausted!

This is the “sharps bin” and pack of syringes I have taken home with me! The bin is enormous and we are now trying to work out storage solutions for all my syringes so the house doesn’t look quite so goulish! I am thinking about getting some nice fabric and making a drawstring type bag to cover the outside of the sharps bin!

What to do if you suffer from discrimination/bullying/harassment at work

So many people suffer at the hands of bullies in their working life that if it was all reported there would be a national outcry. Being sick or disabled does not protect you from being discriminated against, harassed or bullied. It can happen in so many subtle ways that you may not even fully realise what is happening to you until its too late, signed off with stress, demoted or moved to a role that isn’t suitable for you.

Discrimination, bullying, harassment can be so subtle that when you try and make a complaint about it you start feeling like you are making a fuss about nothing. Its not until you start writing all the events down that you see the bigger picture and what an enormous campaign of abuse you have endured.
http://www.jfo.org.uk/info/new/index.htm This is an excellent site that outlines what bullying in the workplace looks like. For many people that I have shared this link with in the past it has been a real eye opener.

So many people I have spoken to over the years have all said the same thing “I didn’t realise it could happen to me”, “I thought I was liked”, “I thought I did my job well”. Discrimination, bullying, harassment can happen to anyone, no one is immune to it. It has such a devastating impact on the individual it is happening to, it literally wrecks lives.

Since leaving work I have had a lot of people ask me for advice about employment law, disability discrimination, bullying, harassment, so I have decided to put a blog post together with some basic advice and some links to some excellent websites which will give you further information.

I am not a professional in this field, I have had to learn about this subject. In a previous life I worked in the human resources department of a large company, so have seen both sides of the situation. Please use my basic advice in conjunction with that of a professional eg a union representative, citizens advice bureaux or an employment law solicitor. If (in the UK) you have legal protection as an added component of your home insurance you can access advice through their legal team, they will if your case is good enough and it hasn’t been resolved through your employer’s internal procedures, take it to an employment tribunal.

A case being good enough to go and then go onto win at a tribunal rests entirely on the evidence that you are able to provide. The same can be said for bringing a complaint / grievance forward to your employer. As with a court case or a police investigation the word of just one person isn’t enough to prove a case and this is why a lot of people fall at the first hurdle, they have no evidence.

A case can not be proven by hearsay it needs to be backed up with documentary evidence and witness statements. Witness statements are a nightmare to obtain as your witnesses, most likely will be intimidated by the situation and will not want to openly support you by providing evidence. So unless you have a signed witness statement in your hand forget about it. What you need is documentary evidence to support your claim that you are being treated unfairly / discriminated against. Documentary evidence can take the form of a diary where you’ve noted down things that have been said or done to you, performance reviews, meeting notes, objectives that have been set for you.

Unfortunately when you are being bullied, undermined, discriminated against you become so beaten down, that you lack the energy to get up and start fighting back and that is how the perpetrator wins. When you are in the situation you can get so used to continually trying to keep yourself afloat in a sea of unreasonable demands, criticisms, derogatory remarks and policies / procedures not being fairly implemented, that you can’t see what is happening to you or you are just so terrified about losing your job that you daren’t stick your head above the parapet.

When a problem arises in your work life my first piece of advice would be to try and resolve the issue informally. Many situations arise out of miscommunication or a poor understanding of an issue, by approaching the person who you are having an issue with, you can sometimes nip the issue in the bud before it escalates. You do have to have quite a bit of courage to do this and many people are unwilling even to speak to the person due to their fear of confrontation. If that is the case take someone with you when you make contact with them, be it a colleague or a union representative. Ask the person if you can speak to them privately as you have something you wish to discuss. It is important that if you carry out this step you make a note of the date, time and who was present at the meeting, you may need to refer back to this in the future if this situation isn’t resolved. A meeting of this type can be carried out regardless of the persons job role within the company, so a manager or a person as the same grade as you. Its important that you document the fact that you have asked the person to stop their unacceptable behaviour towards you.

In the case of physical violence / intimidation / sexual harassment it may not be “safe” for you to approach the individual. Always assess your safety and if you decide you are putting yourself at risk of further violence / sexual assault just go straight to the next step below.

If the person refuses to discuss the situation with you or denies there is an issue and you feel that their explanation isn’t acceptable (or it wasn’t safe for you to approach the individual) you can opt to take a more formal approach by requesting a meeting with the persons manager or a member of the human resources department. Explain in your letter that you have approached the person involved (or haven’t due to personal safety issues) but you are still unhappy about the situation. Also explain in your letter that you wish for the matter to be dealt with informally at this point. If you are a member of a recognised union you can ask for your union representative to be present at the meeting in a supportive capacity. If you do not have a union in your workplace you can ask if you can be accompanied by another member of staff. Having someone else with you serves two functions firstly they can support you and give you the courage to raise the issue and secondly they can act as a witness that the meeting took place.

(In some cases where your allegations are very serious as in the case of physical violence / sexual assault / harassment, racial harassment, disability hate crime the person you approach may decide to immediately make the process formal. Do not panic this is a good sign that they are taking your complaint very seriously.)

Always ensure you keep copies of any paperwork  / letters you submit and also note the date and time and who was present at the meeting for your records. Its important that you start creating a paper trail to prove that you have raised the complaint should you have any issues further down the line. Keep all paperwork outside your workplace in a safe place so that it doesn’t become mislaid. Never use your complaint as a source of gossip, do not discuss the issues with anyone other than your union / employee representative. If word gets back to the person you are complaining about or higher up it can make you look unprofessional and immature and therefore ruin your credibility. Keep everything confidential because believe me in these situations you do not know who you can trust.

If any notes are taken at this meeting – which any good employer should do so that both parties have a record of what was discussed and what the outcome of the meeting was, ensure you receive a copy and that all parties have signed them for proof of accuracy and of the subject matter / outcomes discussed. Once in receipt of the notes take a copy, so that if you lose them you have a back up and also ensure you take them out of your workplace and keep them with any other paperwork relating to your complaint. Again keep all paperwork confidential and do not discuss it with anyone.

If you are unhappy with the quality of the note taking, important points have been missed or what you have said has been incorrectly noted then tell them and do not sign the notes until they have been amended. Amendments should be initialled by you and the person who took made the notes and amended them, so that if someone looks at them in the future they can see that the amendment was agreed and the notes were not changed by you at a later date!

Give the person you have had the meeting with a reasonable amount of time to investigate your complaint. Everyone sees a reasonable amount of time differently, at your meeting ask for a date for a future meeting so that you can be updated. Ensure your request is written in the notes with all parties agreeing to the date and time. For me a reasonable amount of time would be no longer than four weeks, less if it concerns just one individual. If you have had no follow up meeting after a month send a letter to the person who is conducting the meeting (keeping a copy for yourself) letting them know that you consider the length of time taken to conduct their investigation is unreasonable.

The follow up meeting to discuss their findings and a plan of action on how to resolve the situation should be held before four weeks have elapsed. In a perfect world this should be enough to resolve the issue and restore harmony to your working environment. Even if everything is resolved keep hold of the paperwork relating to your complaint. Things in the workplace can change very quickly, a reshuffle of a management team, a change in contractual terms and agreements can quickly throw a spanner in the works and your signed paperwork for reasonable adjustments, a resolution to a bullying/ harassment/discrimination complaint is your insurance policy, that the company will have to stick to.

Some companies like to hold the meeting to discuss your complaint and then bury it hoping that it will go away. They do this by not holding the follow up meeting because they haven’t actually completed an investigation. Its one of the oldest tricks in the book and don’t fall for it. Ensure you chase up the meeting (keeping copies of your letters). I would send no more than two letters, one to the person conducting the investigation and then if you get no response within 7 days, send the next one to their manager outlining your complaint, the date your informal meeting was held and that you now believe that the outcome of their investigation has never been provided to you and its taking an excessively long time. If at this point you get no joy, do not give up. You are creating a good paper trail which shows that your complaint has not been taken seriously, so the next few paragraphs will explain what to do next.

Everything that I have written about so far is about resolving issues informally however sometimes no matter how hard you try this approach does not work. Do not blame yourself if this happens, unfortunately in life you come up against people who despite being aware of your disability will make no allowances for it or that they are so used to being a bully / harasser and have always got away with it they do eventually revert to type or your complaint is buried / ignored. Remember you didn’t ask for your disability, you didn’t ask to be bullied or harassed and if you made a complaint you have every right to a resolution.

When you’ve tried to resolve things informally and it hasn’t worked there are two options open to you, put up and shut up ( not an approach I would advocate, as it will do you no good in the long run) or make a formal complaint. Every company in the UK has by law to have a Grievance procedure. Many people are terrified of the grievance procedure as they feel that it will mark them out as a troublemaker and then their lives will be made a misery. To those people I would ask isn’t your workplace a miserable place already due to the treatment you are receiving? How much worse could it possibly get before you will lodge a grievance?  Nervous breakdown ? Demotion? Dismissal?

http://www.acas.org.uk/index.aspx?articleid=1670 this website gives a quick overview of the grievance procedure and how it should be handled by your employer.
www.gov.uk/solve-workplace-dispute/formal-procedures this gives you a brief overview of the law and has some great resources you can download.
http://www.adviceguide.org.uk/wales/work_w/work_problems_at_work_e/dealing_with_grievances_at_work.htm gives some good advice and pointers as to where to get help.

To lodge a grievance with your employer all you need to do is write to them stating that you wish to exercise your right to lodge a grievance. Usually grievances fall under different categories eg health and safety, contractual and discrimination. In your letter keep it brief, factual and unemotional, just outlining what category you feel your grievance comes under. There will be plenty of time for you to give all the details of your complaint when your grievance is investigated. At this point do not discuss anything informally or off the record as it could be used against you. If you are unsure as to what your company’s grievance procedure is include in your letter (grievance) that you would like a copy of the procedure so that you can refer to it in the future. Do not disclose any documentary evidence you have in your possession at this point, this can be taken with you to the investigatory meeting.

It is also helpful in this letter to explain what would be a resolution to this situation. Many a complainant has been thrown off course completely when asked at the investigatory meeting how they wish the situation to be resolved. Your ideas about the resolution to your complaint needs to be seen as reasonable, putting “I want him / her sacked” maybe what you want but isn’t at all helpful. At the end of the day your employer will decide if the individual has breached company policy and needs to be dismissed. Your resolution should state the obvious that you want the behaviour to stop, you feel that the manager /  the individual / your department is in need of training / retraining on a particular subject (disability discrimination, codes of conduct) and that you want a harmonious working environment. Above all the resolution should be a positive statement about how you see things moving forward. Having the person /persons sacked is on the top of everyones wish list but keep those thoughts to yourself. It looks much more professional if you anticipate this question and have given it some careful consideration.

If you have got to the point of lodging a grievance, your paperwork trail should be quite impressive. It should include your diary detailing when meetings were held and who with, the diary should also record any derogatory comments that were made / actions taken against you etc these entries should dated and a note made of the person responsible. Any meetings that you have attended such as performance reviews ( you should ask for a copy of these for your own records), attendance meetings when they happened and what was discussed – copies of notes signed by all present. Any written requests that you have previously handed in such as a request for a meeting about reasonable adjustments www.gov.uk/equality-act-2010-guidance, or informal meetings to resolve the initial complaint before it escalated. If you can obtain witness statements get them,  however these are notoriously difficult to obtain as people fear for their own jobs and what if your grievance is not upheld and you all have to continue working with the perpetrator?

Along with the paperwork it’s also good to have a copy of your contract (especially in disputes about terms and conditions) a staff handbook if your company is large enough to have one, your training record and any other work related paperwork. If you have things like customer letters stating how lovely you were when dealing with them, include those as well as they can help in performance issues.

Your employer should acknowledge your grievance by writing in a timely manner, I would say no longer than seven days. Some companies state in their staff handbooks how quickly they will acknowledge your grievance. If they do ensure that they stick to it (unless the person you have sent it to is on holiday or off sick, it maybe a case of then sending it to someone else within the department or their manager), if it means sending another letter to chase up their acknowledgement of your grievance do it and keep a copy of your letter for your evidence file.

Contained within the letter of acknowledgement should be an outline of the grievance procedure plus a date and time of a meeting (investigatory) to hear your complaint. If your workplace has a recognised union, the letter should inform you that you are entitled to representation or an employee representative and you will be asked to arrange their attendance. At all times both parties should keep this information confidential.

When you attend the meeting it’s important to have a clear idea of what you want to say. Its important that you try to remain calm and focused. It is very hard not to become emotional because you have probably endured weeks / months/ years (in some cases) of poor treatment at the hands of one or more individuals. Only refer to things that you know as fact and not hearsay however you can suggest that they speak to other individuals who you believe may have also been subjected to the bad behaviour.

Ensure that your evidence file is in order, make a copy to give to whoever is investigating your grievance – never hand over original documents ( that’s why I always advise people to make at least two copies of any documentary evidence). Only give them a copy of your documentary evidence and not your notes for the meeting. If you can, have your evidence linked to your notes so its easy to reference the information and ensure the investigators copy mirrors your own. Don’t expect to be able to read off a crib sheet as you will be interrupted by the investigator, as what appears crystal clear to you, wont to them and you may need to go into more detail to help them understand the issues.

The investigator is not there to judge you or take sides, they are there to listen to your complaint. Don’t expect any warm words of encouragement they should remain impartial. If you feel that they are taking sides tell them calmly. Don’t get angry and don’t get flustered ensure you know what you are going to say and what the evidence backs up, like the back of your hand before this meeting. Ensure that you and your representative are singing from the same hymn sheet and they know the points you want to raise. The employee representative / union representative can also bring up points you may have forgotten in the heat of the moment.

If you feel yourself becoming flustered or you become emotional ask for a five minute break so that you can calm yourself down and refocus yourself. A reasonable investigator will agree to a break and the break and the time the meeting is reconvened should be recorded in the meeting notes.

Under the intense scrutiny of the investigator, who is usually a few pay grades above you, you can find yourself intimidated. A key thing to remember is that they are a human being too, who eats, sleeps and shits just like the rest of us do. They hold no special powers, its just a fancy job role. If you remember that, you can talk with confidence about what has been happening to you.

At the end of the meeting you should be informed that an investigation will be taking place and given a date of when they would like to appraise you of their findings. Ensure you read the notes of the meeting carefully and any mistakes are corrected before signing. If a copy of the notes isn’t offered ask for them, you are entitled to have them. Again do not keep these notes at work, ensure they are placed with the rest of your complaint related paperwork.

Usually companies have written into their grievance procedures how long it will take before you have your next meeting. If however due to the number of people that need to be interviewed or key personnel are out of the business due to holiday / sickness the time can be extended by mutual agreement and this should also be confirmed in writing. You may also be called back to be re-interviewed to gain more information. The same rules apply you are allowed your union/employee representative to be present and notes must be taken etc

The next meeting should be to confirm whether or not your grievance has been upheld. If it hasn’t they should explain clearly the reason why they believe the person(s) have no case to answer. Remember that you have the right to appeal this decision but there is usually a strict time frame in which to do so. If your grievance has been upheld, they then need to discuss with you what they feel the resolution to this situation is. Again if you aren’t happy with the resolution you have the right to appeal the decisions.

Hopefully after all of this your grievance has been resolved and you are happy with the outcome. Each company has its own appeal procedure. If you are unhappy you need to keep appealing until you have exhausted the companies policy or you have reached a satisfactory resolution. Only once you have exhausted the company’s appeal procedure due to being unhappy with it not being upheld or unsatisfactory resolutions, should you consider going to an employment tribunal and that is getting into areas that I am not qualified to talk about.

Tribunals like to see that the complainant has done everything within their power to resolve their complaint with the company. The £1200 fee now introduced to lodge a tribunal is enough to focus the mind to try and get the situation resolved. Once at this stage you need professional advice from a solicitor to help you navigate through the tribunal system or if your union has been supporting you they may provide a solicitor or your home legal protection (home insurance) may do so.

Obviously its not always possible to exhaust the grievance procedure within your company as they may ignore your grievances, in the hope that you will go away. In this situation it’s important that you have all your paperwork in order to prove you did everything you could. Keep raising in writing to them that your original grievance has not been heard in the XX amount of time that you first made them aware of your request to lodge a grievance. Again don’t just send your letter to the person that you sent your grievance letter to but also send copies of your letter to their boss and even their bosses boss if you need to.

The most important thing to remember is that if sexual assault, physical violence, verbal threats, racial hatred etc have been committed by the perpetrator you are entitled to call the police. People have this crazy notion that when they are at work you can’t call the police. Of course you can, your workplace doesn’t exist in a bubble outside the law of the land. No one can prevent you from calling them if a crime has taken place.

Sorry this is such a long post but it is something I am passionate about. People really need to start arming themselves with knowledge and stand up for their employment rights. No one should be working in fear of being discriminated against, abused, harassed or victimised.

Where do blog posts come from?

This post was prepared in advance due to the octreotide trial I was supposed to be having on April 8th. On Monday 7th April I received a phone call to say the trial had been cancelled for Tuesday and been moved to Monday 14th April 2014. I will of course update you with all the gory details if indeed it does take place on 14th April.

I know some people are curious as to where I get the ideas and inspirations for my blog posts. Some are interested in the process I have for blogging.The answer to where I get the blog subject from is quite diverse and sometimes strange! The process of how I get the blog post idea from my head to the page can be equally bizarre.

My blog started out as a way for me to be heard, even if no one read it in the beginning it didn’t matter to me as long as I got my thoughts and feelings down on the page. I felt like all the doctors I came into contact with weren’t listening, my health was bad and I was being labelled with conversion disorder yet no psychiatric help was given.

I knew that I wasn’t manufacturing my condition and they weren’t some vague symptoms being complained about by a stressed out thirty something  woman to gain attention. So initially my blog was about what was going on in my life at the time.

When I first became ill I became convinced that I was dying or was going to die due to the lack of help I was receiving from the medical community. In a way my blog the last statement I could make should the worst happen. It could be used as evidence against all those doctors who had told me that I wasn’t ill and that the problem was all in my head. It was a scary time and some of my earlier blog posts are very angry and desperate.

To begin with I tried to keep my personal life separate from my blog to give myself some anonymity. However I found this created a disconnect between myself and what I was writing. I felt I couldn’t be honest and be the passionate person I am without you the reader getting to see me, the writer of this blog. So slowly I started letting my guard down and letting the readers of my blog get to know me a bit better. You can’t empathise or understand a person unless you know them.

As time went on I realised I wanted the blog to be more than just about my health. I wanted to encompass other subjects that would be of wider interest to people within the world of chronic sickness and not just those suffering with EDS, Pots and dysautonomia.

I have been blogging a lot recently as my health has been so poor that I can not do my normal activities. Sitting  (or in my case lying in bed with the computer on a lap tray) at the computer / tablet and letting off some steam and thinking about writing has helped me get through this difficult period.

So I better answer the question as to where I get the ideas for my blog posts.

Some come from my life as in what new medical struggle I maybe facing at that time, some come from conversations with friends ( my blog post on friends and chronic illness came from a friend and two different peoples stories on two different Facebook groups which were literally posted within hours of each other) , others come from suggestions that my mum makes ( usually she asks me something and as I am explaining it to her I think wow that would make a great post!) Some come from reading other peoples blogs, reading their posts sparks an idea in my head for a subject. Some come from my memories recent or long ago. And weirdest of all some come to me in dreams. It seems currently after an 18 month hiatus my brain is back in blogging mode.

I really need to start carrying a notebook with me wherever I go – which is mainly around the house. The number of times I will be having a conversation with my husband and then suddenly think “oh that would be a great post” and then five minutes later realise I’ve forgotten it is getting frustrating! Usually the really good ideas stick in my head, they get me animated straight away and whenever I can I am thinking about them and trying to think of the right way to approach the subject.

Once I have an idea in my head, I start having a conversation in my head about it. I like discussing the idea with myself and seeing where it takes me. I know this sounds completely crazy but it keeps the subject alive in my head. Then when I feel happy with the subject I start to research it, if its a topic that needs better understanding or some basic fact checking. Sometimes I look at other peoples blogs and see what sort of things they have written about on the subject.  If its something medical I will research information about it and find good items I can provide links for. Sometimes its a subject that doesn’t need any research (like this post) but these are few and far between.

Blogging is so much more than just typing words onto a page. For me its an escape from chronic illness and a way to express myself. Writing has become again to me as important as breathing. Although I only post twice a week – Mondays and then Thursday or Friday, I write most days. Either for future blog posts or editing / refining the ones that are already written.

My blog posts can take hours to write, which is something my husband really doesn’t understand! He doesn’t “do” reading and only saw my blog properly in the last few weeks. I do know that he is incredibly proud of what I am doing, even if he has never read it. I will chat to him about what I am writing about, he never complains that I take time out to write and he is very encouraging, always asking how many views my blog has received that day.

With the first draft of my blog post, I just let the words tumble all over the page, random paragraphs with random thoughts dotted all over the place. I am queen of tangent land – I am forever going off on one! I like to quickly get down whatever is in my head and then have a break from it for a bit.

The second draft I look at what is working and what isn’t and if I have actually addressed the blog post theme or if I’ve gone off on a tangent. If the tangent is good and needs to be included I then work out a way to get it to link to the subject. This is then followed by another break.

Third, fourth, fifth drafts ( and possibly more depending on the subject) is about moving paragraphs around, changing things I am still not happy with and improving the flow of the post. Throughout the whole process I am constantly looking for errors and I never ever manage to spot them all. I hate it when I am really pleased with a post and its been published and then I see an error. Its horrible and happens far more than I would like it to.

The thing I struggle with the most is blog post titles, a lot of the subjects I am dealing with aren’t that “sexy” so it can be difficult to come up with something that will catch peoples eyes when they are doing a Google search. Sometimes a post will have many different titles before I finally settle on one that I like. On occasions though it is whatever I can come up with before my deadline to publish. Some work, others don’t. I am not a professional, I don’t have an editor or anyone helping me write my posts this is a one woman outfit.

Once my new blog post has been published I then have to try and raise awareness about it. I do this through my facebook page www.facebook.com/pages/The-Myasthenia-Kid/205747292968956?ref=hl and my personal twitter account @kidmorris, I am also on google+. All this takes time and effort but a day “pushing” a blog post every few hours really increases the number of views it receives. I can get a bit fixated on the number of visits my blog receives. I have noticed that on the days I publish there is a big spike in views, which is music to my ears as it means my story is getting out there and I may be able to help others who are also struggling to get a diagnosis.

Currently I am trying to work at least one blog post ahead so that if I have a few rough days my blog can carry on without any input from me. This has been particularly important this month with a hospital stay coming up (fingers crossed that the bed is available) on 8th April (this is being written at 6am on the 7th April) and I have no idea what shape I am going to be in afterwards. As stated at the top of this blog post my hospital admission has now been moved to 14th April.

So that’s how my blog posts come about if you were curious! As soon as I am able I will update you with how my octreotide trial went.