Tuesday, 18 June 2013

You were given this life because YOU are strong enough to live it!

Yesterday I went to the see the GP thinking that after seeing the Rheumatologist back in May the letter would have got to the GP and my meds would be changed!!
   Of course it wasn't but the GP went with what I could remember of the appointment (sad isn't it).
I spoke about the fact that I am awaiting appointments for the Pain clinic and for Physio for my Hydrotherapy sessions.
Whilst I type I also realise I need to ask for help with my dyslexia (which pre fibro I didn't have a problem now typing or writing my letters go back to front, inside out you name it whatever way it gets spelt wrong but correct letters in incorrect order. Thank goodness for speel check otherwise this blog would take me even longer.

Anyway after chatting for a while (with my NICE GP unlike the 2 previous!!) He asked me if I thought I could be depressed????

                                      ER

YES, I would say that
  • being unable to carry my little one or sometimes have him on my lap without pain.
  • feeling like i've run a marathon every morning (when obviously I have NOT)
  • having to plan every move I make so as to cause the least amount of pain to myself.
  • hoping that the sun is out everyday (living in the UK does not help with this)
  • constant pains in my hips / knees and ankles mean standing is hard let alone walking.
  • Pains in my wrists, elbows and shoulders mean (well you get the drift)
  • Being unable to work on a job that I loved and trained so hard to get (and now losing said job)
  • No money coming in
  • The prospect of having this condition forEVER
  • feeling jealous when I see old ladies playing tennis in the park and realsiing that at 43 I can't even lift a racket.
  • no knowing how to string a sentence together anymore apparently called Fibrofog.
  • Not remembering a single thing that I should be doing birthdays, drs etc
  • my spelling as previously mentioned.
  • not being able to watch any news programmes or pick up a newspaper without crying.
  • unable to walk far without pain and in far we're talking metres my alleyway is a good indicator.
  • being unable to walk with a stick as the pressure of leaning of said stick would cause to much pain in my arm.
  • being scared when driving now about parking as 3 point / 5 point turns etc would kill my arms. Not to mention pain I get in knees from driving anyway.
  • Having to let people down when I make plans as I can never tell from day to day how bad i'll be.
  • Thinking all the time that people don't believe me.
  • and there's more .....................................

                          Yes I am possibly a little depressed at having a life that is not disimilar to an 80 year old lady (obviously one in bad health rather than those playing tennis in the park) when I should have had a least another 20 years of being able to run around with my kids and dog, working fulltime and looking forward to a retirement possibly by the sea that we could enjoy!!

PHEW! - rant officially over!

New medication starting ths time is Citalopram and Nortriptyline combined. Now I've been on Amitriptyline from December up to April and I was like the walking dead - walking, breathing ZOMBIE!! and i'm terrified that will happen again but apparently Nortriptyline causes less drowsiness we shall hope and she but if you pass a person looking like this - feel sympathy for them they could be ME!!                          Please feel free to avoid the temptation to batter me over the head with a spade it will make no difference to my cognitive thinking, lol!!

If you were to read the list of side effects for each medication you'd wonder if it was worth taking them but as I am still early stages I'm ready for any kind of gamble just in order to have some semblance of a normal life. and to play tennis into my old age of course

        
4 x Staying Strong Mantras!!

4 Simple Mantras to Help You Stay Positive and Happy

By

“The best place to find a helping hand is at the end of your own arm.” ~Swedish Proverb

Mantra, according to the dictionary:

Any sacred word or syllable used as an object of concentration and embodying some aspect of spiritual power.

Mantra, according to Sirena:

Things I say to myself to help me deal.
There are times we all go through that just straight up suck.
During these times, it can be hard to think about anything other than what’s going on. We can become so consumed in our own misery that we often overshadow any glimmer of hope.
And although these times can seem endless while we’re in them, it’s through these crappy times that we learn the most about ourselves and receive some of life’s greatest rewards.
I can only say this after going through some of my own crappy times. You know, experiencing little things like breaking up from an engagement, being unemployed, questioning my sexuality, severing several friendships, wiping through my entire savings, and accumulating way too much debt.
All within the same year.
Yikes.
Through my own experiences of hopelessness, confusion, and doubt, I’ve learned to establish a few simple, but very effective phrases to help me stay positive and to keep things in perspective.
So now, whenever things cross my path that may initially seem unbearable, or if I begin to doubt myself, I just remember and repeat some of the following mantras:

1. Keep your head up and your heart open.

I repeated this phrase to myself over and over again after my aforementioned breakup. At the time, the last thing I ever wanted to do was to open myself up again.
After being with the same person for over 6 years (6 years!), I quickly realized that this kind of thinking wouldn’t get me far.
I trusted myself that if I just kept my head up and my heart open, good things would come into my life. And I’m glad I listened to myself.
I use this phrase both literally and figuratively.
By actually keeping your head up, smiling at people as they walk by, and keeping aware of your surroundings, you may notice something or meet someone that you potentially could have missed had your head been down.
When to use: During a break up, when you feel let down by someone, or when you feel betrayed or mistrust.

2. Go slowly.

With everything. Eating. Talking. Taking a shower. Driving. Even having sex.
I noticed when I was super-stressed out about things, I had a tendency to run around like a lunatic, doing several things at once, often times having to re-track my steps because I was so distracted that I left several things out.
I found that my projects, errands, and even my conversations with people became very watered down because I was rushing just to finish.
Now, whenever I feel like I’m rushing to just get things done, I slow down my pace, take a deep breath, and take my time with whatever it is I am rushing to do.
When we slow down, we can taste all the flavors in our food and we digest our meals better. We are better communicators when we talk slower, and we become better listeners.
Accidents? They wouldn’t happen as much if we weren’t in such a rush to get somewhere.
It’s quality over quantity.
When to use: When you are in a rush on the highway, when you’re rushing out to get lunch, or walking around the office, when you feel pressure from deadlines, or while you’re annoyed sitting in traffic.

3. Be easy.

Or in other words, don’t sweat the small stuff.
I realized that most of the issues that were giving me anxiety were completely out of my control, and they were usually things that wouldn’t matter five years, five months or even five minutes from the time.
Like freaking out that I didn’t have something to wear to a party, or stressing that I’d mess up choreography while teaching a class.
I learned to not get so worked up over the small things, stressing about matters that, in the end, really didn’t make a difference.
So, if you find yourself getting road rage from the guy that cut you off on the highway, let him be. Why get angry and stress yourself out over it? Just be easy.
Did someone on the train bump you as they walked by? Who cares? The cab is packed; it wasn’t her fault. Be easy.
When to use: When it’s 1 AM and you’re wide awake in bed, thinking about the next day’s to do list, when you spill on your new white tank top, or when the copy machine at work jams. Be easy. There are far worse things in life.

4. Let Sirena be Sirena (swap out my name with yours).

Most of us wear masks. And most of us are afraid to be ourselves, simply out of fear of judgment.
We take jobs we don’t really care for, stay in relationships we don’t genuinely love, and pretend to be someone different for everybody else.
I was there—I stayed in a relationship far longer than I should have and I avoided confronting my sexuality because I was so afraid of being judged.
And I’m telling you, it’s a heck of a lot easier to just be you—whatever that means, whenever, wherever.
While you’re too busy making yourself appear to be someone else, you kill yourself from the inside out. And it can be a long, slow and painful death to your soul.
Bottom line?  Accept yourself for who you are, and just be you.
This was the hardest lesson for me to accept, but the one that has given me the greatest clarity and direction in life.
When to use: Times when you are questioning yourself, when you feel outside pressure to do/be/say/act in a way that is not congruent with your true nature, or when you hold back from doing what you truly want to do because you’re afraid of being judged.
Since my “sabbatical” from life, which is what I’ve now jokingly nicknamed this year of despair I described earlier, I have made some dramatic and positive changes.
I have a job that I absolutely love, I am on track to pay off all of my debt by the end of this year, and I have accumulated a solid amount in my savings.
I’ve also re-kindled past friendships and made some awesome new relationships, while becoming grounded and confident in who I am.
These mantras helped me get to this point. Having them has been an effective trick to help me stay positive and on track.

 Stay Strong <3 <3 <3

TTFN!!!
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Sunday, 9 June 2013

Living Life the Fibromyalgia Way!!

Fibromyalgia - What is it? Have I got it? Is it catching?

I have read, researched and over analysed this condition since being told I (might) have it and then had a confirmed diagnosis of Fibromyalgia. Most books and articles go through the symptoms, side effects, medications and compatible treatments such as physio, relaxation, acupuncture etc but what about explaining to someone what its like to live with this, what are the daily struggles we face and how hard is it when you try to explain to friends and family and they sadly still just haven't a clue.












I have had another blog running for the past 2 years but instead of the fun, happy blog it used to be I started to fill it more and more with my life with Fibromyalgia and its not a fun topic so I have set up this blog to hopefully help those that want to learn more about the condition (both with Fibromyalgia and friends and family who want to find out more) but also as some kind of therapy for myself.

So who am I?

Mother, Wife, Nurse, Friend, Sister, Aunt, Facebook addict (well mainly to Candy Crush & Criminal Case, I claim they help with my brain power) blogger but most importantly I have taken on the title of a Fibro warrior.

 

So lets gets the basics out of the way and I really hope this will be an interactive blog, where people can feel free to post comments, talk about themselves etc etc.
I have also set up a Facebook page that will do a direct link to my blog on called -

Fibromyalgia - Living it - Fighting it!

So what is Fibromyalgia??????????





is a good start but doesn't even touch the many symptoms associated with this condition.

patient.co.uk describe Fibromyalgia as :

Fibromyalgia causes pains and tenderness in many areas of the body, and tiredness. You may also have other symptoms. There is no simple cure. However, there are various treatments that ease symptoms in many cases. Non medication treatments which may help include exercise, heated pool treatment, and cognitive behavioural therapy (CBT). Medication that may help include a painkiller called tramadol, antidepressants (for their pain-relieving action) and some other medicines listed below.
The word fibromyalgia means pain (algia) coming from the muscles (my) and fibrous tissues (fibro) such as tendons and ligaments. Most people with fibromyalgia also have other symptoms in addition to the pains - see below. Therefore, fibromyalgia is sometimes called fibromyalgia syndrome (FMS). It is a chronic (persistent) condition. Fibromyalgia does not affect the joints, and so is not an arthritis.
The cause of fibromyalgia is not known. However, research has shown that people with fibromyalgia have certain subtle changes in some chemicals in the brain and nervous system. For example, there seems to be a minor change in the level of certain brain chemicals called neurotransmitters. These are the chemicals responsible for transmitting messages between nerves and between brain cells. Research studies have also shown that people with fibromyalgia tend to have an increased amount of a chemical called substance P in the fluid that bathes the brain and spinal cord (the cerebrospinal fluid (CSF)). This substance may be involved in the way pain messages are transmitted.

A current main theory is that people with fibromyalgia have an oversensitivity to pain signals in the brain. This is called central sensitisation. This may be due to various minor changes in brain chemicals. What triggers or causes these changes is not known.

Note: the term fibromyalgia has been used for a long time. However, because the cause is now thought to be due to the processes described above in the brain and spinal cord, the term fibromyalgia does not accurately describe the condition. That is, there is little evidence that the disease is due to a problem with peripheral tissues such as muscles, tendons and ligaments (although the pain is often felt in these tissues).
About 1 in 50 people develop fibromyalgia at some stage. It is seven times more common in women than in men. In most cases it first develops between the ages of 25 and 55. It is less common in younger adults, and is uncommon in children.
The main symptoms are pains felt in many areas of the body, and tiredness. Some people also develop other symptoms. The severity of symptoms varies from person to person.

Pain

Pain can occur in any area of the body. Typically, many areas of the body are affected, and some people feel the pain all over. The neck and back are the sites that are often the most painful. The severity of the pain can vary from day to day. The pains may be made worse by stress, cold or activity. After a night's sleep, you may also feel quite stiff for a few hours. Many areas of the body may also be quite tender.

Tiredness

Tiredness (fatigue) is common, and is sometimes severe. In some cases it is more distressing than the pain. It is also common to have a poor sleep pattern. You may wake feeling exhausted. Many people feel worst first thing in the morning, but improve by the afternoon. Even a small amount of activity may make you tired. The tiredness may cause you to have poor concentration.

Various other symptoms have been reported by people with fibromyalgia. Also, there are a number of other conditions that often occur at the same time as fibromyalgia. As a consequence, quite a number of other symptoms may occur in people with fibromyalgia. The following are perhaps the most common, but it is not an exhaustive list of every possible symptom that may occur:
  • Headaches are common.
  • Irritable bladder is common - you may need to go to the toilet more frequently than usual.
  • Irritable bowel syndrome occurs commonly in people with fibromyalgia - with abdominal pains, sometimes with diarrhoea, constipation or bloating.
  • About 1 in 5 people with fibromyalgia also have restless legs syndrome (see separate leaflet called 'Restless Legs Syndrome' for more detail).
  • Painful periods occur in some women with fibromyalgia.
  • Pins and needles in fingers and/or toes.
  • Some people describe a feeling as if their hands or feet are swollen (although they are not actually swollen).
  • Depression or anxiety develops in some people. It is not clear whether these are part of FMS, or develop as a result of having this condition.
  • Some people with fibromyalgia also have chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME).
Fibromyalgia tender points
Fibromyalgia is usually diagnosed by the typical symptoms and a doctor's examination.

To make a firm diagnosis, symptoms should include widespread pain involving both sides of the body, above and below the waist, as well as the neck, back and pelvis, and have been present for at least three months.

A doctor's examination will find tenderness in various parts of the body. During the examination a doctor may press firmly with a thumb on various parts of your body. The amount of pressure used does not cause pain in people without fibromyalgia. However, the pressure typically causes people with fibromyalgia to wince with pain. The increased sensitivity to pressure (being tender to mild pressure) can be in many places in the body, and may be all over. However, a doctor may press on certain specific sites (as shown in the diagram). These sites are generally fairly sensitive areas and the easiest to check for tenderness which is typical in people with fibromyalgia.

Apart from finding areas of tenderness, the examination by a doctor will usually find no other abnormality. There is no laboratory test that confirms the condition. However, tests are advised in some cases to rule out other diseases that can cause similar symptoms. For example, your doctor may do some blood tests to rule out an underactive thyroid, early arthritis, etc.
Fibromyalgia is not an arthritis, it is not due to cancer, and does not damage any joint or tissue. It does not shorten expected lifespan. In some cases, symptoms ease or go after a few months. However, in many cases it is a chronic (persistent) condition which tends to wax and wane in severity. Quality of life can become affected.
There is no cure for fibromyalgia. Treatments aim to reduce symptoms as much as possible. Over the years a range of different treatments have been advocated with variable rates of success.

(care of patient.co.uk)





Now my only complaint about that above description by patient.co.uk is "Quality of life can become affected" to ANYONE who is living with this condition I'd say that was an understatement if ever I've heard one!


By far the best descriptions are by those who have the condition

Understanding Fibromyalgia If You Are a Friend or Family Member of a Sufferer

If you are a friend or family member of a person who has Fibromyalgia, it is vital that you educate yourself thoroughly on the condition. Fibromyalgia can be a very complicated condition for the sufferer, as well as those people the sufferer comes in close contact with. It is not easy to detect when a person has Fibromyalgia because you cannot see the effects of the illness visibly. Many times, people may take for granted that a person is truly sick if they cannot visibly see the illness. In this article, I will explain general ways that a person can understand Fibromyalgia if they are a friend or family member of a sufferer. The first way that you can understand Fibromyalgia, if you are a friend or family member of a sufferer is to learn as much as you possibly can regarding the illness. One of the most important things that you should grow to understand about Fibromyalgia is that it consists of numerous symptoms. This comes because of the illness stemming from an issue within the sufferers central nervous system. With the Fibromyalgia sufferer, there is also a lot of pain that stems from muscles and the soft tissues in the body and the fact that they lack the strength and ability to replenish themselves as healthy person's muscles and tissues do. When you mix all of these sensitivities together, you have a wide range of symptoms and complaints. Many Fibromyalgia sufferers may express the fact to you that they are in pain, others may mention it briefly, and still some may not mention it at all. Just be aware that the person does suffer, whether they talk about it or not.
As a friend or family member of a Fibromyalgia sufferer, you may find that the person does not seem to be the type that likes to touch through handshakes, hugs, and so on. It is important to understand that this is not truly personal. As a sufferer of Fibromyalgia, I have hurt the feelings of others because I shy away from hugging and other types of physical activity, like play wrestling and so on. It is hard to explain to people that you simply hurt very badly at times, and it is easier to avoid these activities to save yourself some physical pain. If you know a Fibromyalgia sufferer that does this, do not take offense to it. We may really want to play around and hug and other things, but sometimes, the pain is so overwhelming, we just cannot.
If you are trying to understand Fibromyalgia because you are a friend or family member of a sufferer, you should understand that it is often difficult for the sufferer to make plans and commit to things. Some days, it is very hard to simply get out of bed. Other days, it takes all that we have to simply clean the house - even if the mess is small. I have found that my family and friends often do not understand why I do not visit them very often, or why I do not make plans with them very often. It is very hard to explain that I must use the energy that my body has as efficiently as possible. I have two children, both boys. My oldest is six years old and my youngest is four years old. I home school them, and write for various online venues. In addition, I keep house and do most of the shopping. Because of the amount of things that I have to do, it is difficult at times, to exert any more energy. It is important to me not to allow my immediate family to suffer, so, many times I have to postpone activities with friends and other family members. It is not that I want to; it just ends up that way sometimes. Do not be offended if you live outside of the home of the Fibromyalgia sufferer, and do not see them very often. Just try to understand it. Keep in touch as often as you are able by email, instant messaging, snail mail, and/or telephone. Not only will it keep the relationship positive and productive, it will mean a lot to the Fibromyalgia sufferer that you care and are willing to step up and take the plate when they are sometimes unable to.
If you are working to understand Fibromyalgia, there is another important aspect that you should be aware. Fibromyalgia sufferers often lack the characteristics of a good memory. This is often referred to as "Fibro Fog". It is often difficult to remember small details. We may misplace items frequently, or have to be reminded of things often. It is not that we purposely forget important details, we actually try very hard to remember them, and it is just that it is a part of our illness. If you are a friend of family member of a Fibromyalgia sufferer, it is important to understand fibro fog and accept it.
The above listed suggestions are really just the tip of the iceberg when dealing with a friend or family member that has Fibromyalgia. There are many other things that you can do to assist the person with Fibromyalgia as well. The Fibromyalgia sufferer will not ask for help. It is partly from pride, and the other part is not wanting to inconvenience others. Please refer to the following list for other ways that you may assist the sufferer:
  1. If you must do some shopping, call the sufferer to see if they would like to ride with you or if you can pick up anything for them. It is often difficult to get out of the house, drive, and walk around a large store if you are in pain. This would help them a lot.
  2. If the sufferer has children, offer to take them for a couple of hours or come over to sit with them so that the sufferer can enjoy a warm bath, or a nap. It is often quite nice to be some peace and quiet - especially if the home is always bursting with energy.
  3. You may want to help the sufferer with various tasks, such as cleaning up the house, laundry, and/or yard work. It is often difficult to perform these tasks, and the help will be appreciated.
  4. Keep in touch with the sufferer. They often feel as if they burden people, and that people may not care anymore...if you keep in contact with them and let them know that they are still loved and valued, they will be very thankful.
  5. The Fibromyalgia patient must keep their doctor appointments. If you are able, encourage them to pursue treatments and medical care. One way you can do this is to offer to take them to appointments or ride with them. ....
MY FIBRO STORY -

8 months ago I could do anything I wanted (obviously within reason and without hurting anyone else lol) In October 2012 I started to catch colds left right and centre, with pains in my right shoulder I was put on numerous courses of antibiotics nad as soon as the virus went another came kicking straight at its heels. I'm a busy women with an extremely active 2 years old, working full time on a busy oncology ward as a staff nurse on shifts and when I was off was helping my husband with his business. So I blamed doing too much, blamed the shifts I was doing at work, tried to slow down a bit but by November was really suffering and my hip kept clicking out and causing immense pain when I walked (MY patients even said I should get into bed rather than them, bless them).
One shift (well my last) I was working a 13 hours shift and it was horrendous, now my job is extremely physical anyway but also emotionally as you can expect with Cancer patients. Obviously I am unable to go into great details here for patients confidentiality but ALL of my patients on shift were terminal, and patients were being rushed in that were dying within hours. We didn't ave enough side rooms and we had relatives staying by the nurses stations just crying and crying and we were helpless to help them other than consoling. Then I argued with a Doctor and I don't do that I'm very professional but he hadn't been and as advocate for my patient I was fuming. I actually felt like I had an out of body experience where I could see everything that was going on around me and the room just kept spinning and spinning. I went to the bathroom and cried and cried and actually couldn't stop crying I only had another half an hour of my 13hr shift. But was sent home and 6 months later haven't gone back.
Whilst off on sick leave throughout December I thought I'd get better with rest, I didn't I got worse, that ruled out my theory of it being my job or doing too much as I could barely move for pain which had now spread to both hips, both shoulders, ankles, chest pain, back spasms (awful) neck spasms (awfuller) knee, elbow well you get the idea.
Various various meeting with GP's and various Gps at that and I was referred to a Rheumatologist. I saw her in January 2013, very suprised by how fast I got in to see her which also made me worry. The care I received was great though, lots of blood tests that as a nurse i'd never heard of, I had a full body scan to rule out any other life threatening conditions. I was clear.
The consultant spoke to me after the results so this was back in February and said she thought it was most likely Fibromyalgia (never heard of it) and not to worry as its very common (hmmm) and to see her again in May (aaaarghhhhhh).
Since then my condition has only had brief periods of making me feel better, in fact on one occasion I even went to my work to say I was hoping to restart really soon (speaking too soon and all that).
Now I've just looked back at what i've written and its all about the PAIN because with pain its really all you can think of but ............................... I have major depression, get dizzy, confused, can't remeber anything and have trouble pulling a sentence together. Constant headaches, bowel probelms, NO mobility without pain, unable to even lift a full kettle without pain and carrying my little one is impossible.
In June I was diagnosed with Fibromyalgia and discharged (burst into tears) and referred to the pain clinic and to start Hydrotherapy with a physio.

That's where I am now, So in my future blogs I'll be doing a blog that's more like a diary - living and fighting Fibromyagia day by day!!




                                  

TTFN!!!!
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