Category: Fibromyalgia

chronic fatigue, Chronic illness, Fibromyalgia, invisible illnesses, loneliness

A fool for hope

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Every night when I go to bed I go with the hope that tomorrow will be the day that I will feel better and every morning I wake up feeling foolish for having that hope. But I feel that I must have hope otherwise what else is there?  If I don’t have hope I will let chronic illness beat me and I hate to be beaten. I never want to give in.

I have so many plans and goals I want to achieve. But the reality is that they may never be within my reach. I have made a point of setting myself realistic goals, Is it wrong to have hopes and dreams? Or am I just setting myself up for a fall?

Is hope the thief of joy?

I even have hope that I will be well enough to clean and tidy the whole house and make it sparkling, play on the floor with my boys, make my husband his tea. I have hope for the small things in life because they are the most important.

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chronic fatigue, Chronic illness, Fibromyalgia, invisible illnesses, loneliness

Lost Confidence 

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When I lost my job I lost my confidence. I always had buckets of it. Losing my confidence is something I have struggled to deal with and continue to struggle with. It’s not just something that you can magic back. My confidence was already lowering as time went on as I dealt with life working whilst I was chronically ill. It has felt like my armour has been taken away and I completely exposed. Make-up used to be a part of my armour but that too has also gone. Putting my face on everyday is too exhausting and it no longer makes me feel protected like I used to.

I no longer feel like a confident mum. My illness has robbed me of that. I can’t be the mum I want to be my illness won’t allow it. I don’t have a “normal” family life. Normal is something I have never aspired to be, but right now I would grab it with both hands if I could swap it for my current reality.

I have put myself out there by taking on new and different things. So far this year I started Roller derby, Volunteering, Learning to drive and next week I will be starting a course at the local college. None of these thing have helped me take my confidence back.

It is hard, really hard not to succumb to these chronic conditions but when they restrict your life in every way possible but what can I do? I am doing all the right things to keep as much of a normal life as I can but nothing is working.

But when your job is gone, your friends are gone and your family life is drastically altered what is left?

chronic fatigue, Chronic illness, Fibromyalgia, invisible illnesses

Goals

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goalsI think that it is really important to have goals in life even if you are chronically ill.

My most important goal in life is to be the best mum I can be to my 2 boys. Being a mum when you are chronically ill is challenging. There are a lot of things I want to do with my boys but my illness gets in the way, it gets in the way a lot more than I would like it to. It is extremely important to me that as they grow and get older that they understand why I am not like the “other mums”. At the moment they are to young to fully understand why their mum is different to other mums. I find it extremely upsetting when they ask my why I can’t do certain things. I hope that in the future that I can educate them in the reality of the effects chronic illness.

My second most important goal is to be my own boss and be successful in the career path that I have chosen. It is something that I am working towards and I hope my goal in this is achievable. I have high hopes that my dreams can become reality.

Of course one of my goals is to be “well” again but I know that this goal is something that may never become reality but there is always hope that my health may improve some day. Without hope things are dark, I do have dark days but I always have hope in the background. I don’t just want to be well for myself. I want to be well for my husband and my 2 boys. When I got married I was well and I have changed. My husband has me in health and now he has to deal with me in sickness.

Have goals, write them down. They might not always be achievable but it is something to focus on. I always have a mix of ones I know that I can achieve and ones that I can work towards.

chronic fatigue, Chronic illness, Fibromyalgia, insomnia, invisible illnesses, Uncategorized

Full-time Job

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Old concrete wallI haven’t done a blog post in a while. This is mainly due to my health taking a big decline. I am back to being as worse as I have ever been. Being chronically ill is a full-time job, even more so when it is at it peak, and if the world didn’t hate me enough it has made me full of the cold.

My insomnia is chronic, As I write this it is about 4 am and I haven’t slept yet.

The Dr has altered my medication again and it has helped slightly. But with every medication comes side effects and they are making me drowsy and wiped out.

I am trying to look forward and focus on positive things. I am starting an evening class at the local college which runs for 8 week and afterwards you have to study for 3 weeks. I hope that this is achievable. But I know I am just not well enough and I don’t have the brain function to carry out a full-time course.

My husband and I are going away to see Shed 7 in November. I am really excited to get away, catch up with friends,see a band from my youth and spend some alone time with my husband.

So everything isn’t ALL bad. You have to try to look for the positives in life. even if it is something small each day that you are grateful for. It is the small things in life that make the difference.

 

chronic fatigue, Chronic illness, Fibromyalgia, insomnia, invisible illnesses

Take us seriously. Please.

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It is time to wipe away the stigma that Fibromyalgia and other invisible illnesses are associated with. I mean really, who would want to pretend living in constant pain and being chronically fatigued all the time?  I would rather life my life to the full instead of wasting it by faking an illness which is associated with nothing but misery. Don’t you think that if we had the choice that we would be out there living our life to the full instead of being bed ridden, house bound and jobless.

The lack of awareness and understanding by doctors and health professionals is astounding. There is a complete lack of awareness amongst the whole population, which isn’t their fault. I knew nothing of this disease until someone I knew was diagnosed, then I was diagnosed shortly after. I had heard the name but knew nothing of the symptoms and hardships associated with the condition or the varying degrees in which folk suffer.

So much more research needs to be done on ALL auto immune diseases. The NHS has a responsibility to take these illnesses as seriously as other conditions which are visible. It is almost like their view is, you can’t see it therefore it doesn’t exist. There are many invisible conditions that are taken more seriously even though they are not always visible.

If the government and NHS took these conditions more seriously and really got behind them it would help to create public awareness which I think in turn would encourage more people to donate money to the associated charities. More donations mean more research could be conducted.

It is extremely sad that I see no “cure” or any effective treatment being discovered in my lifetime.