Dreaming is too scary…

Hi to you and I hope that your day is wonderful. I have had a good day reading other bloggers words on their terror from dreams that they have experience, and without sounding like I am horrid it is a comfort to know that others go through what I am going through. 

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My daughter and I had a serious discussion last night where she told me straight that I have always been a strong person and that this weaken shell who can not do anything is like a stranger to her. She had told me that I must treat me as if I am one of her clients and act as I would for them. She is right, and if I had me come in as one of the kids I assisted, the first thing I would do is get them to work through to the event and were the first sign began. For me, it was after the 9-day coma and I have just not been the same – loss of language base, loss of feelings, brain impairment (left-hand side)  and having great problems remembering a variety of other things. So at the end of the chat and looking through what others do with the problem, and they go to the local mental health centre to get real help so they can then sort out the rest. This time I will just have until the doctors tell me that I can go.

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I have used all the energy I have for today and am going to have a little sleep. Thank you for taking the time to read my thoughts on this Friday. I hope your weekend will treat you well. 

 

Asking for help and meaning it!!!

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A happy hello and I hope that your day has been your friend. I have had one of my off days with the fibro giving the rest of my body a ‘not do that today…’ orders. 

It is so difficult to keep myself motivated and finding reasons to get up and try to get through the day.  It was bad enough when I just had the fibro but now I have a list of possible complaints that no one has an answer for and I am just left to deal with it until the medical profession work their way through it.

I am doing all that I have been asked to do – watch what I eat, exercise, try to stay happy but nothing stops that days/weeks like this. I am so down that I think I will go to a mental health clinic until we have this sorted out properly this time. I have always been of the mindset that if I do not stay long then it is not that bad. However to lose my hold on the language, basic skills, not being able to read, in short, my fine skills I really do need help. I do not know what damage the turn in October did but I certainly need proper help to fi it and the ego can take a holiday whilst I repair the brain.

I am one who has always been able to manage everything on her own, but now it is very restricted and it makes me aggressive, moody and depressed. I keep thinking that if I ask for extended help that people will think that I have something seriously wrong with me, therefore it is me and not anything else. I am currently sitting here in tears because I do not know how to go next. I have a course for the job agency (which will be a problem because of my bone joints), I want to just walk away to never be found again, and all because at 56 I should not be like this. I am going to say goodnight to all and I hope that your tomorrow is happy and blessed. 

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Please don’t roll your eyes.

A cheerful hello to you and I hope that your day has been a wonderful one for you. I have been reading much on the internet as the people who want me to look for a job deem this a being active in job seeking. I am a little stumped has to how they are going to get those done. I am more than qualified to return to the workforce if you just look at the qualifications, it is the medical issues that are stopping it.

I don’t usually tell people I have fibromyalgia because this admission is usually accompanied by the eye roll or the laugh that states very clearly I am just too lazy to work. Fibro is a unique illness in which many people, including physicians, think we’re making it up. I have lost count of the number of times I have had doctors tell me fibromyalgia doesn’t exist, and this includes the medical profession. It’s all in our heads because we really need to get counseling, or are simply looking for drugs.

People living with fibro are often treated like depressed slackers looking for opiates. A conversation with a new physician can go like this:

  • Doctor: “What brings you to the office today?”
  • Patient: “I’m hoping you can treat my fibromyalgia.”
  • Doctor: “Fibromyalgia, hmm.” (Rolls eyes.)

 

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It was not until I had my turn that I actually got the medical profession to treat me as a real patience. Sadly all it has done for me is add to the possible problems I can have. My coma was eight days and I have no memory, I was a home chatting with a friend and woke up nine days later. I have lost many skills and I had three outs where the staff had to rescue me and did not think I would come back. Since I have left the hospital I cannot do things for myself such as read, write, visit places (am really terrified of all) and it does not help because I look so normal.

I have found that doctors don’t like to deal with fibro because there is no cause, and no real treatment either. It’s difficult for them to figure out if your back pain is something there’s a test for, or is it “just fibromyalgia?” Are you having a heart attack or is it “just fibromyalgia?” Do your joints ache because you have a “real” illness, or is just fibromyalgia or is it brain matter or is it “just fibromyalgia?” New symptoms often get dismissed and go untreated because it’s “just fibromyalgia.”

Patients with fibro experience many of the same symptoms of other illnesses. Our sensory nervous system has gone haywire. We experience extreme, debilitating pain and fatigue all the time, every day. Everything hurts from the top of our scalp to the bottoms of our feet. Simply wearing clothes can cause excruciating pain. Some people don’t believe this is possible, so they give us the eye roll. When bright lights, loud noises, or crowds are so irritating to our nervous system that we need to go home, or we turn down an invitation to go out, we get that eye roll. We might feel like going out, but after taking a shower and getting dressed, sometimes there is no energy left to actually leave the house. Our social lives consist of doctor visits and trips to the pharmacy.

Cognitive function and memory are affected. We can’t find the right words for things. Recently I have found that I have a new problem and that is with needing to saying something to a person and I just can not do it, my head has the message but I can not get it out. Trying to hold an intelligent conversation can be quite a chore. Words you say to us can get jumbled up as well. Your words can sound like abstract babbling that makes no sense. If we don’t answer you right away, we’re not ignoring you, we’re trying to figure out what you’re saying! We may ask you the same question over and over again because we can’t remember the answer. We may stop talking altogether until our jumbled brain reboots itself.

Our digestive systems are often out of control. Frequent, unexpected diarrhea is a problem, as well as horrible constipation that lasts for weeks. People living with fibromyalgia always need to know where the nearest bathroom is because we never know\when that dam is going to break.   

A fibro warrior’s anxiety and depression can be extremely difficult. Along with the myriad of other symptoms we live with, we also deal with the social stigma of mental illness. Mental illness is a physical illness. It is one I have managed to hide from all but with the way my life is now I think I am going to have to put my hand up for more than the two weeks where I could get myself back on an even level. I am just so confessed and really think that ending it all because then it will not be a problem anymore.

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Living (I could keep them hidden) with these symptoms for decades leaves us physically and emotionally exhausted. We often need to give up our careers, our social lives, and time with our families. We worry about how we will put up with the pain and fatigue one more day, how we will take care of our children, how we will have enough money to survive when we can’t work. Friends and spouses sometimes leave because they can’t handle our illness. We often can’t leave the house for days or weeks at a time. We are bored and lonely.

Fibromyalgia is an invisible autoimmune disease that also makes us susceptible to other autoimmune diseases. We experience extreme pain and fatigue like many other “respected” diseases. People with fibromyalgia deserve the same level of respect given to the “real” illnesses. We are not lazy. We are not making it up to get out of work. We are not drug seeking. We are not “crazy.” We deserve not to be stigmatized by society because they can’t understand what it’s like to live with fibromyalgia. Please don’t roll your eyes.

Again thank you for joinginng me for my little ranting blog and I hope that you have have a wonderful day. 

I am going to be BRAVE!

137107118037A wonderful hello to all and I hope that your day/evening has been kind to you. I have had a busy day as I had to go to the job network centre so that they can prepare me for the workforce. I had a little internal giggle as the young person looking after me could easily be my child. He covered all the possible jobs I could put in for – I had to stop him when we got to retail, as I most certainly do not have the personality to cope with this sort of job. Please do not get me wrong I admire retailer staff greatly and I am always very polite and cheerful as I know the garbage that they are subjected to, and this is why I could not do it – I would end up hitting a customer with their bag of goodies.

I did remind him that I am still under serious medical care who do not want me returned to the workforce until they give me a full clearance as they may decide that I cannot be capable to work again, at which time my case worker told me that all it takes is a positive attitude…I had to honestly bite my tongue to stop the real full-on laughter. I did not give him any flak as he is just doing his job as he was trained to do it but honestly, you think that the government would give these younger people a better training so that they can handle unemployed better. 

I honestly do feel sorry for the younger ones coming through, we learned via on the job training and now it is all via extern away from the actual workplace, then just dropped in and ‘good luck with that’. My skills on the computers are not brilliant (I know how to turn it on and off) but if I am in a classroom with my students and I have one of my students ask a question I can not answer there will always be a fellow student who can, so we share knowledge. It is an old technique that we are losing which is a shame.

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I like it when I have my full days out even when it means I am bedridden the next day, I get to watch people and study them. I am not one to sit in judgment of anyone but the writer in me loves to see the difference in how a person acts given the same set of circumstances. It is one of the best ways I have taken my mind from the pain. 

I look back over my life and what I have hidden in the closet, covered up by those skills I have with my mind to create a tale where it is not me but a character. I now think I have to agree with my doctor and I need to ask for PROPER care to give the demons, monsters, and evils their marching orders. I will then be in a place where I can recreate the ME I want to be. No, I do not know what that is yet because I have always had to share my mind with other tenants so it will be a challenge, but it is far better than what I am doing at the moment…one week in care, the therapist for a couple of weeks then repeat.

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So at the end of it all, I have decided to stop planning games, face up to the truths that have been with me for a least nine months (epilepsy, stroke and not sure what else), and from seventeen years old, depression, anxiety, and most likely major issues from childhood abuse.  It is only be admitting it is there can I get rid of it and learn to live a life I want to.

I am not too sure how the English are on this one as I have had a full day and I find it better for me if I can get it out whilst it is in my head. If I go back to make sure that the English are correct I begin to fix up mistakes and lose what is in my head. Enjoy your tomorrow xx

Mother’s Day!

images (3)A cheery hello to all and I hope that your weekend has been wonderful. I have been in bed for most of the day as I have a migraine but I am over the worst of it so now I get to annoy you!!!  Today’s Mothers Day but I am one of those odd creatures that raised her offspring with the belief that as offspring you should treat you Ma as if Mother’s Day is every day. To all those out there that care for our younger generation, thank you for the wonderful job you do and know that it really is appreciated.

I am going to the workshop tomorrow, my hearing test on Tuesday and I think I will go to the hospital to see if they can admit me for the tense care. I think that the bodily healing will happen at a better rate after I get my brain back to where it should be. I am going from one spot to another without any idea as to what I am doing. To quote one of the Doctors’ from the Wagga hospital “I am one very lucky lady as I should not have made it back from the coma”.  The person the ambo’s brought into the hospital was in traumatic care, an array of other problems, so the fact that I am still here is a big bonus. I simply need to adjust to getting myself into a working person. Step one is that I need to get my mind into a working order or as best as I can.

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I am like so many people out there who have raised children or are raising kids, it is a 24/7 job and very thankless. You get one thing wrong, and everyone is very critical but the bonus job is no thanks for just how good you are doing. Your young ones start to show negative or anti-social behaviour and it is a credit to your poor parenting. I know that I have a collection of mental issues I should have sorted out prior to my turn, but with the extra health problems I do not have any chose anymore I need to fix them up.

I have been given a second shot at this so I could not waste it, just work done according to the importance of my skills. I have used Mother’s Day as my day to decide where I want to and work my way to play Mother for me. I had a good brain and a great selection of skills which the medical staff will help me recover some of them. The medical staff that I can get someone and get other parts of the brain to learn how to do what is missing, but it will be hard work. My GP has told me that once I have that fixed I can move on to the body repairs. So it is a slow step but going to happen.  

Thank you for your time and I hope that you tomorrow is wonderful.

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Pathway to hope!

A delightful hello, and I am so sorry for the break in my blogging but we have had a couple of days of real storming weather and our systems are not working as they should, and because I have an internet pad is a little on the older side I have to wait for one of the kids to refresh my net details so it will run as it is meant to. I am one of those who is happier with a ‘proper’ book in my hand, going into a store and engaging with a ‘real’ person to purchase my needs, and in general doing things the old fashion way. 

images (3)I am not too sure if I told you about my Wednesday and how it all went (one of the nice things about having memory lose everything is still new and exciting, but sorry to you if you have been through this already), the job network has organized for me to attend an introduction to job seeking info session  in the afternoon with a computer introduction tutorial for the following week. I have one of my specialist’s appointments that I told my case manager about and she told me that it would have to be approved by them first. When I asked my doctor about it she gave me a medical letter to be taken straight to Centrelink which will cover me. My doctor said this way if I was well enough I could go, if I needed to leave I could go and any medical matters came first. Which certainly made me feel better. I am getting very close to going to the mental health unit for some serious time to get it all together. I feel like I am so close and then something like that happens and I am back to that ‘kid caught with her hand in the cookie jar returning the goods your sibling took, and no grown up listening.’

I am going in on Tuesday afternoon to have my hearing properly tested and the lovely gentleman who did the quick one on Wednesday said that I will most certainly need them, it is just how much they will need to be adjusted to. One thing I did find very funny was my right-hand side ear is the one that is in a worse condition than the left. A case of left side brain problem so right has stepped up to even it out!

I have had a big week with medical Wednesday and shopping, the rest of the week I have been doing housework without too many problems. I am still not sleeping any better and the most horrid nightmares invade once I am asleep, the kids have said that there hear nothing which is one thing I suppose. It is so hard to wake myself from them and when I do I am in a horrid place with the bed a mess I am really wet and shaken and too scared to go back to sleep.

downloadI am slowly beginning to realize that I need to get myself fixed up as I helped my young people did for themselves. I have lost parts of my English, so what and stop feeling sorry for myself, it is either re-educate myself or learn to work with what I have. It certainly does not mean I can not write books, or help people learn English. There are a vast array of tales from survivors of strokes that make mine look like a tiny hiccup, so a few sessions at the local water aerobic centre and find a food eating programme that works for me and will keep me safe from a second showing whilst helping me find my healthy weigh.

Thank you again for reading my thoughts and planning, I so appreciate it. I have far to go but I know I will get there. I hope you are enjoying your weekend.

Round hole / square box – YES or NO?

different_not_broken_mental_health_shirt-r093be355dd4142989690693f3ecb7d18_jyn6h_324A delightful hello and I hope your day was all you could have hoped for. I have been home about an hour and this is with me leaving at 7am. It has been a really big day but I am happy with my results. My GP agrees that I should more than likely be in the rehab programme which will allow me to rebuild my self-confidence (did not have much to start with), address what I have playing games in my head, and feels that this will enable me to get to the point where I no longer feel as if everything that goes wrong is my fault.

I got stopped by a bloke from the hearing shop just short of me getting the bus, and as I have been promising myself that I would go for this test, I took this as a sign and had the first step. I was really amazed at how little hearing I actually have. My left side is better than my right side but I am returning for the proper test next Tuesday. The gentleman who was looking after me did say that it will be a little different but not that much. So I am up for hearing aids as well, this one I can deal with as all that wonderful R&R concert I went to is worthy of a little lost of hearing, and all reading this who lived through the 70s with our wonderful bands can stop laughing…my rebellious Aunty took me to this concert I was the tender age of 11 and my life has never been the same. It must have taken a good week before my hearing returned, but ‘proper’ rock had another supporter. 

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My psychologist can see where some of them are coming from but would rather I work through this as we cover the steps she feels are necessary. I did explain to her that this goes back a little further than the Stroke in June. I had a meltdown in April and ended up in a Mental health unit for short visit, then released with the promise I would visit a psychologist on a fortnightly base for at least six months. I did show her the letter that the one in Wagga had written and I told Corrine that nothing had really changed. I still have demons tvoierrorising me, am still trying to make believe that I am the same today as I was 10 years ago, but the sad bit is that I have never had to blame with my nightmares.

Anyway my friend I hope you have not found this to boring ( I really enjoy those day where I feel as if I am getting somewhere). I hope you have a restful evening and a joyful day

Finding what is hidden!

A sweet hi to you and hope that you have enjoyed your day. I have had one of those days where I can not be sure what it is controlling me. I slept until 3:20 pm but I will say that I did not go into a proper sleep until 6:40 am, I had one of those night terror evenings. All those really bad horror films from the 1970s rolled into one and invaded my mine.

I know that I am really invading my kid’s space and I know that it is an annoyance that they could do without, I simply do not know where to go. I cannot stand on my own and I have no other family that would be willing to support me, despite the fact that I have always helped them when needed. Tomorrow I may be lucky enough to get some answers about finding somewhere to live and getting my head into a place where I can sleep at night like normal people. I have the employment agency, GP and psychologist tomorrow, so it is a full day for me. But enough of feeling sorry for myself, I like these blogs where I explore a different topic  – annoys the demons as I can cut out their voices whilst I am working on this.

I have been looking at the massive array of recreational activities that people have available to them. I love doing handcrafts – knitting, sewing, bookbinding, crocheting, cooking, candle making and so on but I have found pages of ‘to do craft things’ I have never thought about. Making beautiful clothing, odds and ends for houses, glorious Christmas accessories, exquisite furniture, the list is endless. Even the ones I thought I had down to breathe taking do not compare to the skills of other with ‘homemade’ crafts.

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I love visiting the local markets, not only does it look like a gathering of flower-power kids but the craft work is breathtaking. I have a friend who hand makes natural candles and sells them online as well as covering the markets. I have over the years came home with pre-loved objects and reconditioned them, either to give to friends or make my house look better. I have found that doing crafts to be relaxing and very often I have lost track of the time. I have even worked with my males mates repairing their cars (60/70s models – real cars)  and again found that to be relaxing.  

images (3)I also think that writing is a craft that we do for an array of reasons, to educate, to advertise, to communicate, to dream, to help, to talk. Yes TALK, I have had people tell me over the years that this is a contradiction, one cannot write and talk at the same time but for me, I talk the best when I write it as my way of talking. I feel the tales from centuries ago penned by writers and what they talked about. So for me writing is my safe haven, my way to see how others see what is happening by looking at the tales and adventures captured via their story-telling.

As I have a full day tomorrow I am going to sign off now but not before thanking you for reading my words. I hope that you tomorrow is wonderful and I will be back in the evening.

Okay! An independent idea…oops!

A wonderful hello to you and I hope your week has started well. I have pretty much ignored the world whilst looking for a room to rent in a house somewhere in my area, as the kids have pretty much decided that we will go to the mainland at the end of the lease. It is better for them, and certainly, for me, the clinics, hospital, and doctors etc are certainly closer, and I can find support groups that can help me retrain my mind and body to get it to where I feel in a place that I can control. 

I have spent much time since my funny (really odd that we call something that left me in ICU for 8/9 days ‘funny’) turn trying to get my head around where I get to go. I have never been good with ‘grown-ups’ (left over from the years of torment as a child) which limits my options to start with, I relate best to the future of this nation and our young people’s ability to deal with all that is out there, particularly those that have been damaged by adults and the VERY messed up system. Some for reasons that we can see but so many keep it hidden as they are taught that it is their fault

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It is often we make our youth feel as if there are to blame for all the errors in our life.

I really enjoy interacting with our young people and I had a talent for getting my youth to stand up for themselves and create a person they what to be. I was excellent in the classroom (generally the biggest fool in the room) I truly believe that learning should be fun, and I work very hard to make sure that every single young person I had enjoyed the lessons. It breaks my heart as the medical profession do not think that I will end up with a clearance to go back to teach. I think youth work more of a risk for work as often the youth are more damaged, so do not need someone who needs more assistance than them in charge of caring for them. I might try to write a novel, something I can work on for my good days and something I can ignore when I am off.

I think with the move to the mainland and the kids cutting me lose may end up being a good decision, even though it really scares me. I still have trouble regarding the person I was before June. I need to find some group that can help me centre on the problems that the demons bring with them and what is needed to make them disappear. Independence has always been so important to me and that whole saying things just to make one think it is easy or okay has never worked with me. I have always had my young people work it out, act on it if it did not work then start again. Nothing to worry about as not a single person has ever been born perfect.

27749781_349691532209328_3085297379391769607_nI do know that I have worked out that I want to be at peace with myself, free from the nasty side of nature, those who think it is their right to undermine those who do not share their passions. I want to regain as much of my good health as possible (something I will never take for granted again). I want to be that 60/70s flower power hippie child I had down as my perfect job in school (Sr Jude gave me four stations of the cross for being disrespectful to God). I simply wish to share what I have as natural skills with those who need them My head just keeps going, the demons, the insecurity, the self-hate, the moves between suicide or not, trying to organise what I still have as skills, what I have for a personality or simply what I do each day and how that has helped me.

Thank you for your time and again I wish you a blessed Tuesday

 

 

 

 

 

 

 

 

 

 

 

 

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