Life behind a screen.

Let down queen.

The inspiration for tonight's blog is based upon my guilt for letting people down...again. Tonight I was supposed to have gone out with a group of friends from school for their joint 30th Birthday meals then some were going out after. Fibro stole my password and I am having a flare. A flare means that I was awake all last night in agony and then I crashed out today sleeping on and off and I am maxed out on painkillers and my pain on the pain scale is at a 9. Thank goodness for my mum who has looked after my youngest for me all day whilst my eldest is at her dads. Tonight I had to become the let down queen and cancel on my friends as I can't get out of bed.

                       


Life revolves around passwords except Fibro often steals the one for 'real' life.

                        

The role of the social network.

The internet and social networking sites such as Facebook are such a life line to people with Fibro and many other chronic conditions and disabilities. As the winter approaches with it's bad weather so many more of us spend more and more time inside due to the weather and how this affects us. For me the cold damp weather plays havoc with my pain levels and mood. Therefore for many of us a lot of the contact with the outside world is through online communities and support groups. These become a lifeline and a place where you can talk to people who experience similar things and you can ask questions and share things without feeling judged and know that people care as they know what it's like. For myself it's been a way of finding and connecting with people with the same condition and gaining friendship and support.

Helpful groups I am in.

Fibromites facebook group                         

Disabled friendship and support

UK Fibromyalgia facebook group

I also follow some other fab mummy friends who are bloggers who have their own battles some also have Fibro their links are to the right of my blog under who I follow but I will also add them here.

Firstly this is a fellow Fibromite who I also know from our children with allergies and intolerances group. She is another mum who is coming to terms with Fibro.

Bad ass and disabled mum.

Talking of mums with children with allergies and intolerances next is a lovely lady who has children who have faced and are facing many of these battles. Her experiences with this have led her to set up a charity to help others struggling read her blog here.

Special allergy children.

Next is superhero mum finding her way through life with disability.

superhero mum

Next is a mum who is riding a roller coaster as a parent of special needs children.

Life is a rollercoaster

I also follow the crutch collective helpful for info about the dreaded ATOS and benefit claiming.

the crutch collective

Their facebook page:

The-Crutch-Collective facebook group

Dear Harry a blog documenting a childhood and it's ups and downs:

Dear Harry

                             
                                                         

                                                            Fibro and family.    

As I already stated in a past blog I am a single mummy to my 2 girls Lillie 7 and Evie 4. They mean the world to me. Fibro impacts us all but we have all had to learn to adapt to my condition and find ways to work round this. This doesn't mean that as a family we no longer have fun we just find ways to have fun depending on how my Fibro is affecting me at that time.

My parents are divorced but as a family we are all still very close. My parents are good friends and we all go on holidays together a few times a year. This is important as financially none of us could go on our own but also in terms of having a disability and illness I need help. My dad himself is also disabled and walks with a stick and doesn't have much speech due to having a stroke 11 years ago but he is a fighter. We have our ups and downs but what matters most is we all pull together. We are all very close!


Family slide show please click to watch.       

                 
                                                  
                                                                                                 
     
 My parents are very supportive of me and help in the ways that I can. Fibro affects the whole family and often my mum has to help out with the children when I am not well. As a result this just makes us all closer. My children adore their Nanny and Grandad and love being with them  .    

                                                                                       

Coping day to day.

The thing with Fibro is that it can vary day to day. This leads people to often think you are making excuses putting things on or milking it so to speak. Having Fibro is like constantly riding a roller coaster wondering whether or not the safety harness/belt is going to work today or not. Everyone with Fibro experiences things differently so you can't think what works for one will work for another. I will try to explain how I experience it daily.

Fibro for me is like having the energy completely zapped out of me all the time. I struggle to sleep at nights despite medication due to pain, insomnia, headaches therefore when I do get some sleep I often wake up un refreshed.

                                             

Days when the children are at school and nursery are not so bad as I get to sleep during the day. I pay for my youngest to stay all day until I pick her sister up from school. This gives me the whole day of peace and opportunity to rest. 

After school it's all go. This is why I need my rest in the day. I don't want my children to miss out so they go to their different activities swimming, gymnastics twice a week, art club, Brownies, tutor comes, youth club. It's exhausting just thinking about all their activities but they are busy bees and they enjoy it. I take them and enjoy watching the activities and see them achieve. Although often I am just sitting there this leaves me exhausted. I don't drive so everything is by public transport which is exhausting.

                                         
                       


Weekends and holidays are where I often struggle and crash out. I have to try and plan things and find things to do with the children that will work for us whilst all still being able to enjoy ourselves. However sometimes a flare or a busy week can put pay to this. I think most parents with Fibro would agree that weekends and holidays can be dreaded. We love our children very much but having them at home all day every day is exhausting. I am lucky in the fact that I get a lot of help from my mum and that my girls are very understanding.

                                       

Sometimes I need to walk with one crutch sometimes two and other times I can cope without. Although it's more distances I struggle with. I tend to pace myself and not do too much if I know I am going somewhere. This is a perfect example of Fibro. I have to wear wrist splints at night due to the pain in my wrists and hands too. I look forward to using my massager's they help slightly. I pop a lot of pills to get through the day.

                         

How do you know a Fibromite is coming in the dark?

You can hear them rattle!

One thing I do find is it is very hard to admit you're struggling and need help. I like to show I am strong and not weak having some through so much in life it's almost as if that's what is expected of me. I only really let my family know just how much I struggle and how much pain I am in. When people ask how I am I may say I am fine or just smile but inside it's hard. I think a lot of people with chronic conditions find it hard to admit they're struggling. We go through many appointments etc but people in our lives often don't know the half of it and this was part of the reason for my blog to let people in.

               

It is important to try and enjoy what you can, and make the most of good days. My children are my world and they are what keep me going. Fibro is like an extra member in our family but we work round it. It doesn't make you any less of a parent and I think it is important to remember that. I think we often get caught up in what we can't do but there is a lot we can do! Our children love us and we can still do things with them. We have to lean to adapt things and make things work for us but it CAN work!


                          

The Fibro army invades and destroys seeking to rob you of your spoons!

Fibromyalgia could best be explained as the best army, navy and air force in one. It coordinates it's attack on your body very effectively. It's force consists of over 100 dedicated warriors who attack you in many different areas of your body. 

                              

I could begin with listing the 63 symptoms and how they effect me and telling you they now believe there are over 100 symptoms with more and more being constantly added. I will list these later on but I feel that the following video made by a fellow fibro suffer will help this list seem more real.

                                       

It's important to understand that Fibro affects people differently as do all the treatments that are out there.

If there was an Olympic sport for medication taking I'd be in with a shot at gold!             

The Spoon Theory

My best friend and I were in the diner, talking. As usual, it was very late and we were eating French fries with gravy. Like normal girls our age, we spent a lot of time in the diner while in college, and most of the time we spent talking about boys, music or trivial things, that seemed very important at the time. We never got serious about anything in particular and spent most of our time laughing.

As I went to take some of my medicine with a snack as I usually did, she watched me with an awkward kind of stare, instead of continuing the conversation. She then asked me out of the blue what it felt like to have Lupus and be sick. I was shocked not only because she asked the random question, but also because I assumed she knew all there was to know about Lupus. She came to doctors with me, she saw me walk with a cane, and throw up in the bathroom. She had seen me cry in pain, what else was there to know?

I started to ramble on about pills, and aches and pains, but she kept pursuing, and didn’t seem satisfied with my answers. I was a little surprised as being my room mate in college and friend for years; I thought she already knew the medical definition of Lupus. Then she looked at me with a face every sick person knows well, the face of pure curiosity about something no one healthy can truly understand. She asked what it felt like, not physically, but what it felt like to be me, to be sick.

As I tried to gain my composure, I glanced around the table for help or guidance, or at least stall for time to think. I was trying to find the right words. How do I answer a question I never was able to answer for myself? How do I explain every detail of every day being effected, and give the emotions a sick person goes through with clarity. I could have given up, cracked a joke like I usually do, and changed the subject, but I remember thinking if I don’t try to explain this, how could I ever expect her to understand. If I can’t explain this to my best friend, how could I explain my world to anyone else? I had to at least try.

At that moment, the spoon theory was born. I quickly grabbed every spoon on the table; hell I grabbed spoons off of the other tables. I looked at her in the eyes and said “Here you go, you have Lupus”. She looked at me slightly confused, as anyone would when they are being handed a bouquet of spoons. The cold metal spoons clanked in my hands, as I grouped them together and shoved them into her hands.

I explained that the difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of a life without choices, a gift most people take for granted.

Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions. So for my explanation, I used spoons to convey this point. I wanted something for her to actually hold, for me to then take away, since most people who get sick feel a “loss” of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else, in this case Lupus, being in control.

She grabbed the spoons with excitement. She didn’t understand what I was doing, but she is always up for a good time, so I guess she thought I was cracking a joke of some kind like I usually do when talking about touchy topics. Little did she know how serious I would become?

I asked her to count her spoons. She asked why, and I explained that when you are healthy you expect to have a never-ending supply of “spoons”. But when you have to now plan your day, you need to know exactly how many “spoons” you are starting with. It doesn’t guarantee that you might not lose some along the way, but at least it helps to know where you are starting. She counted out 12 spoons. She laughed and said she wanted more. I said no, and I knew right away that this little game would work, when she looked disappointed, and we hadn’t even started yet. I’ve wanted more “spoons” for years and haven’t found a way yet to get more, why should she? I also told her to always be conscious of how many she had, and not to drop them because she can never forget she has Lupus.

I asked her to list off the tasks of her day, including the most simple. As, she rattled off daily chores, or just fun things to do; I explained how each one would cost her a spoon. When she jumped right into getting ready for work as her first task of the morning, I cut her off and took away a spoon. I practically jumped down her throat. I said ” No! You don’t just get up. You have to crack open your eyes, and then realize you are late. You didn’t sleep well the night before. You have to crawl out of bed, and then you have to make your self something to eat before you can do anything else, because if you don’t, you can’t take your medicine, and if you don’t take your medicine you might as well give up all your spoons for today and tomorrow too.” I quickly took away a spoon and she realized she hasn’t even gotten dressed yet. Showering cost her spoon, just for washing her hair and shaving her legs. Reaching high and low that early in the morning could actually cost more than one spoon, but I figured I would give her a break; I didn’t want to scare her right away. Getting dressed was worth another spoon. I stopped her and broke down every task to show her how every little detail needs to be thought about. You cannot simply just throw clothes on when you are sick. I explained that I have to see what clothes I can physically put on, if my hands hurt that day buttons are out of the question. If I have bruises that day, I need to wear long sleeves, and if I have a fever I need a sweater to stay warm and so on. If my hair is falling out I need to spend more time to look presentable, and then you need to factor in another 5 minutes for feeling badly that it took you 2 hours to do all this.

I think she was starting to understand when she theoretically didn’t even get to work, and she was left with 6 spoons. I then explained to her that she needed to choose the rest of her day wisely, since when your “spoons” are gone, they are gone. Sometimes you can borrow against tomorrow’s “spoons”, but just think how hard tomorrow will be with less “spoons”. I also needed to explain that a person who is sick always lives with the looming thought that tomorrow may be the day that a cold comes, or an infection, or any number of things that could be very dangerous. So you do not want to run low on “spoons”, because you never know when you truly will need them. I didn’t want to depress her, but I needed to be realistic, and unfortunately being prepared for the worst is part of a real day for me.

We went through the rest of the day, and she slowly learned that skipping lunch would cost her a spoon, as well as standing on a train, or even typing at her computer too long. She was forced to make choices and think about things differently. Hypothetically, she had to choose not to run errands, so that she could eat dinner that night.

When we got to the end of her pretend day, she said she was hungry. I summarized that she had to eat dinner but she only had one spoon left. If she cooked, she wouldn’t have enough energy to clean the pots. If she went out for dinner, she might be too tired to drive home safely. Then I also explained, that I didn’t even bother to add into this game, that she was so nauseous, that cooking was probably out of the question anyway. So she decided to make soup, it was easy. I then said it is only 7pm, you have the rest of the night but maybe end up with one spoon, so you can do something fun, or clean your apartment, or do chores, but you can’t do it all.

I rarely see her emotional, so when I saw her upset I knew maybe I was getting through to her. I didn’t want my friend to be upset, but at the same time I was happy to think finally maybe someone understood me a little bit. She had tears in her eyes and asked quietly “Christine, How do you do it? Do you really do this everyday?” I explained that some days were worse then others; some days I have more spoons then most. But I can never make it go away and I can’t forget about it, I always have to think about it. I handed her a spoon I had been holding in reserve. I said simply, “I have learned to live life with an extra spoon in my pocket, in reserve. You need to always be prepared.”

Its hard, the hardest thing I ever had to learn is to slow down, and not do everything. I fight this to this day. I hate feeling left out, having to choose to stay home, or to not get things done that I want to. I wanted her to feel that frustration. I wanted her to understand, that everything everyone else does comes so easy, but for me it is one hundred little jobs in one. I need to think about the weather, my temperature that day, and the whole day’s plans before I can attack any one given thing. When other people can simply do things, I have to attack it and make a plan like I am strategizing a war. It is in that lifestyle, the difference between being sick and healthy. It is the beautiful ability to not think and just do. I miss that freedom. I miss never having to count “spoons”.

After we were emotional and talked about this for a little while longer, I sensed she was sad. Maybe she finally understood. Maybe she realized that she never could truly and honestly say she understands. But at least now she might not complain so much when I can’t go out for dinner some nights, or when I never seem to make it to her house and she always has to drive to mine. I gave her a hug when we walked out of the diner. I had the one spoon in my hand and I said “Don’t worry. I see this as a blessing. I have been forced to think about everything I do. Do you know how many spoons people waste everyday? I don’t have room for wasted time, or wasted “spoons” and I chose to spend this time with you.”

Ever since this night, I have used the spoon theory to explain my life to many people. In fact, my family and friends refer to spoons all the time. It has been a code word for what I can and cannot do. Once people understand the spoon theory they seem to understand me better, but I also think they live their life a little differently too. I think it isn’t just good for understanding Lupus, but anyone dealing with any disability or illness. Hopefully, they don’t take so much for granted or their life in general. I give a piece of myself, in every sense of the word when I do anything. It has become an inside joke. I have become famous for saying to people jokingly that they should feel special when I spend time with them, because they have one of my “spoons”.

© Christine MiserandinoThe cutlery thief has been in again.... I've ran out of 'spoons'.

Lack of spoons...... 

For me spoons are like gold dust. Whilst in what's known as a flare you often start with little or no spoons. When I do have spoons they are used on things that people take for granted. When I do have spoons they are used on those that matter to me the most my girls. They have my spoons. I am their mummy first and foremost and I want to be with them and enjoy them. To those who may be reading this I hope this helps you to understand when I cannot come out or let you down. It's not that I don't want to, don't like you, can't be bothered or lazy etc it's that I either have no spoons or am in the middle of a flare.

The symptoms of Fibromyalgia:                                               

Those that affect me I will highlight in red.   

PHYSIOLOGICAL PROBLEMS:

__ recurrent flu-like illness

__ recurrent sore throats, red and injected

__ painful lymph nodes under the arms and neck

__ muscle and joint aches with tender and trigger points - up to 18 of them

__ night sweats and fever

__ severe nasal and other allergies                                               

__ irritable bowel syndrome (IBS)

__ weight change - usually gain

__ heart palpitations                                      

__ mitral valve prolapse

__ severe PMS

__ yeast infections

__ rashes and itching

__ uncomfortable or frequent urination

__ interstitial bladder cystitis

__ chest pains (non-cardiac)

__ temporomandibular joint dysfunction (in the jaw)

__ hair loss

__ carpal tunnel syndrome

__ cold hands and feet -(for me mainly feet)

__ dry eyes and mouth

__ severe and debilitating fatigue

__ widespread pain

__ other chronic illness(es) usually present (like diabetes, hypoglycemia, asthma, lupus, ms, etc.)

__ numbness in the limbs, not painful like pins & needles

__ painful swelling in the hands, legs, feet, neck

__ GERDs (gastro-esophageal reflux disorder)/ GORDS - UK

__ “growing pains” start in childhood and teens, continue into adulthood

__ widespread body pain during/after physical exertion 

COGNITIVE FUNCTION PROBLEMS:

__ attention deficit disorder (finding it harder and harder to pay attention)

__ spatial disorientation

__ calculation difficulties

__ memory disturbance

__ communication difficulties (problems speaking, confusing words) 

PSYCHOLOGICAL PROBLEMS:

__ depression

__ anxiety and panic attacks

__ personality changes, usually for the worse

__ emotional lability (mood swings) 

OTHER NERVOUS SYSTEM PROBLEMS:

__ sleep disturbances

__ headaches

__ changes in visual acuity

__ numb or tingling feelings

__ burning sensations

__ light headedness

__ feeling 'spaced out'

__ desequilibrium

__ frequent unusual nightmares and disturbing dreams

__ tinnitus (ringing in the ears)

__ difficulty in moving your tongue to speak (when I have my migraines badly  I lose the power of speech when at it's worst)

__ severe muscle weakness (at times)

__ susceptibility to muscle, tendon, ligament injury

__ intolerance to bright lights

__ intolerance to alcohol

__ intolerance to sound

__ extreme sensitivity to medications and their side-effects

__ alteration of taste, smell, and hearing

__ insomnia

__ inability to achieve stage 4 restorative sleep

__ morning stiffness in the muscles and joints

__ restless leg syndrome

__ muscle spasms

__ muscle quakiness and shivering during/after activity or exercise

__ sleep paralysis (related to stage 4 sleep deprivation)

The extra added bonuses just for me:Asthma, hayfever, severe chronic migraines (every day I've had a headache for 16 months), Hiatus hernia, oesophagitis/reflux also referred to as GORDS, Vitamin D deficiency, Vitamin B12 deficiency, foliate deficiency, IBS, hyper mobility, endometriosis, adenomyosis renal reflux causing recurrent kidney and bladder infections.

         

Any takers for any of the above free to a good home I have plenty to share out?

The Fibro army invades, and destroys seeking to rob you of all of your 'spoons'!

It's this thing called Fibromyalgia

I feel like I am a person of 2 lives. The life before, my past life and my new life. Each different in it's own way. It's not that I chose this route, had some mad epiphany or even had a lotto win for me to choose to live my life differently. Things are different life has changed........

My past life:

I was happy and as carefree, a fun loving single girl always the life and the soul of the party. I had lots of energy and was always filling up my time with exciting things.

Partying Hard!

Then something changed. Like a thief in the night it came and caught me off guard stole things from me when I wasn't looking. At first it was little things getting more tired achy etc I put it down to stress becoming a mummy. It never got any better. Then the thief got greedy slowly and slowly stealing and robbing me of what people take for granted.

May 2005 one of the last times I remember feeling 'normal'.

I then declined, swapping my nights out partying for my bed. Social life dwindled. Who wants to be with someone who cannot be the person they used to be? I became a regular at the drs, and was in and out of hospital like it was my favourite hotel except the room service is rubbish. Friends seemed to drift off maybe they thought I was lazy? putting it on? Or just weren't worth having in the first place? Those that have stayed are worth having.

I was prodded and poked so many different symptoms and nothing seemed to fit. The drs were puzzled and began to say it was in my head. I was in pain and hit rock bottom. Was it me? Was it in my head? Was I lazy? So many questions yet no answers came forward.

Eventually after some suggestions and many exhaustive tests, hospital stays and trips to the drs there came this word. It's Fibromyalgia they said.

My life now:
I am coming to terms with this condition called Fibromyalgia or Fibro as I refer to it. It does not define me as a person but it is a part of me. I am still me. I may have had to change and adapt to life with this debilitating condition but I am who I am.

I still have my sense of humour the fibro hasn't robbed me of that!

I am no longer the Heather of the past that life has almost died so to speak. I am finding a new path in life, it's not what I imagined or planned and it's painful and scary. I have almost had to go through a mourning process of what I had.

I am now Heather, 29, single mum of 2 children Lillie 7 and Evie 4. I enjoy holidays, watching films and documentaries and spend a lot of time on facebook! I enjoy seeing friends when I can, but most of all I enjoy being with my children. What little energy I do have I spend on my children being a mummy and having fun with them.

I just also happen to also be a person who also suffers with a disability this thing called Fibromyalgia.
                                   

                                       

I have this thing.... it's called Fibromyalgia!