GP’s and Still Alice!

Today was a eureka moment! I actually found a GP that cares! I knew they were out there hiding somewhere, but somehow I never managed to find one. Maybe it was my deodorant or the way I dressed, but until today, I haven’t managed to find an NHS doctor that seemed to care that my life has completely changed from what it used to be.

For some reason I told her how I had felt about my previous GP, the one I’d had for over 20 years. I hadn’t meant to ‘dis’ her colleague, but it all came to the surface. And as I blubbered like a whale, if that’s the correct quotation, she held my hand. OMG, she held my hand. I’ve never had this happen before and of course, it made me cry more!

This emotional roller coaster, (okay, I’m exaggerating a little) all started on Sunday night when I watched Still Alice with my Son and daughter. I’d read the book and I’d thought I’d seen the film, but the film I’d seen didn’t have Alec Baldwin in it. Yes, I know, I hadn’t seen the film at all.

Maybe at this point I should shout SPOILER ALERT! I’ll try not to give the film away too much but it’s about a fifty year old woman whom discovers that she has an early on set of Alzheimer’s disease. It’s a very tragic story. Anyway, about half way through the film I decided to go into the kitchen to get some yoghurt. I walked all of five yards to find myself standing in the middle of the kitchen wondering what on earth I was doing there! I knew I wanted something, but couldn’t remember what. Considering the film I was watching it should have been hilarious, but it shook me to the core.

These moments of forgetfulness are increasing. My daughter sees the worse of it as I’m with her the most. There seems to be two types of memory lapse. One as the above totally forgetting what I wanted, or the kind when I see the object or word in my brain but cannot say it. A few months ago, within one week I forgot to collect my money from the cash machine and I found the cheese in the bread bin! I also went into the local shop to buy three items. I kept memorising them over and over so I wouldn’t forget. I walked into the store and you’ve guessed it, I forgot straight away. After a few minutes the words usually come to me, often after going through the alphabet several times mind you! This is known as brain fog apparently. Well, I wish the sun would bloody come out that’s all I can say!

After the film, I told my son what had happened over the yoghurt. I tried to laugh it off, but the joke didn’t go down well. He’d seen the film before and had got upset the first time around apparently. And as he spoke the tears fell down his cheeks because the lady in the film he said,  had reminded him of me!

It hit me that night that my family really do see me as sick. I’m not sure to be pleased or sad about that. I’m glad they believe me but to think that my son compares me to Still Alice really has broken me. But life isn’t forever is it? Shit happens as they say.

Whats the moral to this story?

Simple, don’t give up!

Whatever it is, don’t give up. Today, I found a GP who cares. She actually gave me a prescription for a drug that I asked for 2 years ago for nerve pain in my legs. Who knows what tomorrow will bring? Mind you, I think I’ll hold off talking to her about the forgetfulness thing for now. One step at a time and all that😉. Don’t  want her thinking I’m a ‘crazy lady’!

I’d love to hear  your ‘didn’t give up’ stories.

Much love,

Fiona.

 

 

F.E.A.R

Warning: this post does discuss fear within chronic illness but from a Christian perspective. No bible bashing intended just a few personal thoughts and enquiries really from a non church going Christian. So, no offence intended whatever side of the fence you’re on. Or, indeed, you maybe on the fence and that’s okay too:)

So, I’ve had a bad day today following a shopping outing yesterday. As I thought I was stabling from my relapse I thought a short trip out to get my daughters Christmas present and then buying a few items from M&S would be okay. We even had a break where I sipped on my mint tea while they enjoyed their coffee, hot chocolate and mince pies! I smiled sweetly of course and remembered the words from the ‘How to be sick’ book, “be pleased for their enjoyment”. Mmmm, easier said than done!

However, little did I know that my husband would take an interest in the half priced suits on offer of which he required my reassurance. Having given it, he still came out with only two work shirts and a rather orange tie. I think turning 50 has brought out the crazy side of him at last! Despite my efforts of reassurance and a rather exuberant American sales assistant,  he still didn’t come out with a suit! The thought “wasted energy” did creep through my mind, but for better for worse and all that!

So, today has been a bit crap really. Feeling very exhausted like I’ve been hit by lightening. Mind you, I have no idea what that feels like. But my arms and legs are pulsating and as for the soles of my feet. Let’s just say they feel like I’ve run a marathon which couldn’t be further from the truth.

As the day has worn on and the reality that my ‘baseline’ as I like to call it has dropped yet again this year, ( meaning my expenditure of energy is decreasing in terms of what I can do in a day) I realised that FEAR was setting in. This has been happening quite a lot recently. The fear that I am becoming more ill despite my efforts to improve my health. The fear that I’m going to have to succumb to a scooter and not the moped variety mores the pity! The fear that cooking large family dinners is never going to happen again. The fear that I can’t have city breaks or walking holidays. The fear that I can’t walk my dog let alone get back to running again. The fear that this is it! This is my new life and the only progress to be made is down hill!

Now, in the Christian world, the word fear stands for False Evidence Appearing Real. I know the story. Jesus died on the cross not only for my sins but also for my healing. I’m really healed yet my body would like to argue otherwise. My sickness isn’t really there because Jesus took it, but everyday I wake up and do a quick analysis of what hurts and where, and how much fuel is in my tank. And one thing is for sure, I’m not physically healed!

So, my question is, what do I need to do to make that leap from a poorly body to a healthy one? In my church going days, having faith was the key to healing. Maybe that’s true, but how can I conjure that up?

I do believe at times that God does miracles, mainly in the poorer parts of the world mind you. I have heard plenty of testimonies from people whom have seen healing take place. I even prayed for a lady myself once and her hearing improved. Whether it stayed that way is another matter, but at the time it was quite exciting!

But what about for me? Will God heal me?

I don’t think so.

Don’t  get me wrong, it’s not because I think He doesn’t love me. I know He does. Christians would probably say, “He’s trying to teach you something from it”, or the harsher religious types would reprimand me for not having enough Faith sister!

I don’t think there is a formular. I can’t will it to happen nor can I repeatedly quote scripture constantly to make my mind believe that healing is possible.

I trust God, full stop!

I trust Him with my ill health as I did with my good health, but some days are harder to do so, like today.

I just hope and pray for all of us who are sick that we can find peace and happiness within our conditions. Not settling for ill health, but finding a balance between contentment and fear.

Any thoughts you have are most welcome. And again, I’m not writing this to force my faith on anyone. We all get by the best way we can with the best tools we possess. My belief in God just happens to be one of them😉.

Much love,

Fiona.

Isolation V solitude

As time goes on with this illness I think we all start to feel a bit isolated and even lonely. People try their very best to understand but sadly often offer blasé comments such as, ‘you need to be more positive’, or ‘have you tried exercising more!’. My Christian friends declare that God will heal me and ‘to remain in faith’.

I try very hard not to get angry at such comments or exasperated but I’m not perfect!

A friend of mine has recently recommended a book called Finding Sanctuary. It is written by a monk. I have to admit I’m finding it a bit hard going, but one thing has really stood out to me. Instead of feeling lonely or isolated, he suggests to turn the situation around to see it as a place of sanctuary.

I really like this idea because loneliness and isolation can lead to depression which I’m sure we are all so very well aware of. But, Sanctuary. Well, that sort of gives the impression of a blessing. A positive encounter if you like.

I’ve mentioned before that I’m a Christian and I do have a faith in God although it has changed over the years. And for me, sanctuary suggests finding a bit more of Him. I am not trying to impose my views on anyone else as I know not everyone has a faith in a God and sometimes understandably so. But for me, I am trying to find that place of acceptance of this illness. That doesn’t mean giving up on finding a cure or progress. But a place of peace where I can be content with what my life has now become.

I managed to go to the shops on Friday, or rather forced myself as I really wanted to pull together a hamper for my son whom was coming home for the weekend. I came across two ladies that were paying for their items and we’re talking non stop to the cashier. So much so, that the queue behind was lengthening at a great rate of which they were totally oblivious to. I kept smiling as I recognised the loneliness in these ladies. Desperate for a bit of company even from a cashier assistant in a shop. That this person may be the only person they speak to all day. And the reason I recognised it is because I’ve felt it too! I’m 45 and I spend most of my days alone being too ill to go out. If I do manage to gather up the energy to go to the shops I find myself doing the same things as these dear old ladies! ( I do have a teenage daughter at home, but you know what they are like – a grunt here and a grunt there!).

So, as my world is becoming smaller and quieter I hold on to the word ‘Sanctuary ‘, as I really want to see this time as being a blessing and not a curse. (Sorry, that’s a bit biblical!). I’m not quite sure how to get there, that is, the state of peace, but I’m determined to find it, not only for my sake but for the sake of my family and friends too.

If any of you have found that place, then drop me a line and let me know how the journey was for you.

As always, much love,

Fiona.

Thinking is really doing my head in!

Before I begin, I just want you to know that this isn’t a deep emotional post! The title of this post is just explaining my problem!

Over the past few days I’ve noticed that I seem to have a bit more energy. I am, with fingers crossed, hoping that this means I am finally crawling out of this relapse or flare as others like to say.

But don’t you find that as soon as this happens your mind starts to wander to all those things that you could possibly now do. In the midst of a crash/relapse/ flare, one is constantly thinking of the things we want to do but can’t which leaves us in a state of total frustration. But once a bit of energy starts flowing it’s like a switch has been turned on and the adrenaline starts to saw through our veins. Hence, this is why I’m writing this at 1am despite taking  three types of sleep medication!

This current wave of thinking is mostly about Christmas and what I need to do, buy and make. But, we are also in the proceed of putting the house on the market for the new year. Photos are being taken next week and all I can think about apart from the above mentioned Christmas chores is what I need to do to the house to make it photogenic!

Whilst I’ve been ill my head has been relatively quiet, but now it’s making up for lost time!

I’ve  already written my list but it makes no difference. I’ve given up on the mindfulness technique as it always strays back to those bloody lists!

I just wish there was a battery in my head that I could take out at night and put aside until the morning, or power off like a computer! But no, this electric type meter keeps spinning around in my head. Actually, it’s a shame my brain doesn’t produce electricity because at this rate I could light up the whole of Britain!

Well, that’s enough of my rabblings! If I keep on going there will be a knock at the door with someone holding a white jacket with lots of straps on it. Mind you, if they also had a needle full of sedation I might just succumb to it!

Thanks for reading!

Much love,

Fiona.

My temple!

Well hello!

I’ve had a rather long siesta since my last blog. Let’s just say the tortoise has finished hibernation😉.

In the last 16 months, my temple i.e, my body has had three relapses each one taking slightly longer to recover from and leaving my baseline of activity slightly lower than before.

This one that I’m creeping out of now thank goodness, has really made me take stock and therefore, take notice of what I’m not doing for my temple to be healthy. It’s been three years since I started my quest in earnest to find healing for my fibromyalgia and chronic fatigue, but it’s taken this bloody long to really dive in and ‘get with the programme’!

I’ve found a new doctor ( private of course😩) that has last given me hope and more importantly a plan! I’ve now been on this new protocol for 7 weeks 3 days and all is going well.

I won’t bore you with all the details, unless you want them of course! But, I’m still amazed at how long it takes me ‘to do the right thing’! Of course, I cannot be absolutely sure that this new plan will cure me, but I do at least need to give it a good go! Up until now, the most I’ve lasted at eating ‘that diet’, you know the one, no sugar, dairy, alcohol, yeast, processed food and fun ( well that’s what it feels like) is 6 weeks. Hallelujah! I’m now 10 days passed my record!

There’s always been ‘a reason’ why I’ve caved in before and eventually given up. The nutritionist I’ve been seeing for the past two years has tried so hard to be my cheer leader to stick with it, but alas temptation as over ruled common sense! However, the new Dr has given a slightly different perspective of the diet which doesn’t involve me beating myself with a stick because I’ve failed. The amount of lashes I’ve given myself for failing and therefore, not getting well, have been numerous to say the least. I was doing okay in my first consultation until he uttered the words, “it’s not your fault”! Cor, the relief flooded in and so did the tears. Bang went my determination not to cry in front of another medical professional!

So, here I am well and truly back on course. Ready to fight another day! “It’s not over until the fat lady sings”! Not sure where that quote comes from, but I remember reading it a few years ago and several times since. This Temple of mine may not be shiny and glowing in gold just yet, but now I’ve got the windolene and duster in my hand and by God I’m going to use them!

Speak soon I promise!

Much love,

Fiona.

Going against the pack

“As humans we seem often intent to destroy ourselves doing things which we know cause us harm. I think it is key to learn the need to love ourselves enough to ‘do the right thing’, but sadly, that is often easier said than done”. Fiona Wood 2014!

I’ve stolen the title for this blog from someone else. It wasn’t their title but it was a sentence in their blog about diet and it was exactly what I was looking for!
how to stick to your diet | Temporary Fatigue Syndrome
https://temporaryfatiguesyndrome.wordpress.com/2014/03/28/how-to-stick-to-your-diet/

Now, I have to follow a strict diet. Well, to be fair, I don’t have to, but it’s been recommended to me. Hopefully, in the long run my health will improve as a result. I only become aware that it is possibly working when I cave in and ‘do the wrong thing’. Then, I have such symptoms that I ask myself why? Why do I do this to myself time and time again?

But one of the reasons I cave in is that I want to be a part of the pack! That is, I want to be like everyone else! I don’t want to cut out sugar or stop drinking alcohol! I don’t want to do that and the reason why is because I don’t want to be different! I want to be ‘normal’!

I am literally having a battle with myself. “But you need to follow the diet Fiona! If you don’t, you will remain ill”. “But, it’s not fair” screams the inner child whilst stomping her foot! “Why do I have to do this?” Because you are ill you stupid woman!

So, now you know what’s been going on in my head the past few weeks. To be honest, it is getting easier. I think the longer one is ill, the more disciplined you can become. The expression of, ‘I’m sick and tired of being sick and tired’ rings out load like the bells of the local minster church. There is only so long one can keep going around the same round about!

However, ‘going against the pack’ takes a lot of courage whatever it may be. If your trial is about losing weight, then it’s fighting against ‘one won’t hurt you’! If it’s trying to stick to your new exercise regime then it’s the words ‘you deserve a day off’, you have to fight against. Whatever you are trying to master, then going against the pack is not just guaranteed but essential!

Swimming against the tide is a lonely journey. You really need the courage of your convictions as it certainly isn’t a popularity contest.

But, if you can learn to love yourself enough to realise that this option is the best one for you at this time, then you are more likely to succeed.

So, whatever you are facing, whether it is chronic illness like myself or some other problem, heed the words of Dory from Finding Nemo, “just keep swimming!”

Much love,

Fiona.

Acceptance

Of late, I have found this word, acceptance, quite a challenge. In different circumstances it can mean different things. For example, receiving an acceptance card is quite different from the acceptance of one having cancer. It also has two sides, one being accepted as opposed to doing the acceptance.

I don’t know what your religious or faith beliefs are, or even if you have any. But for myself, I do believe in God and I have a Christian faith. Have no fear, I am NOT trying to convert you so you CAN continue to read!

I must admit, I haven’t really explored in depth other faiths or beliefs because I haven’t felt the need to. That’s partly because I am happy with the faith I have found. Having said that, I am not happy with lots of things about the Christian faith but that’s another story!

The reason why I’m drawn to it is because I have found acceptance by God that is not necessarily the Church, but again that’s a different story! And I think because of this acceptance which you may or may not believe in, it helps me to accept myself as I am, warts and all. Although I would state this is a work in progress, but then I’ve started to learn about forgiveness too, but I am digressing!

When I look around at society I see that people crave acceptance. That may be due to insecurities. That was / is certainly my case. I admire those who ‘don’t give a damn’ or ‘couldn’t care less what others think of them’. I am definitely getting there, but it is a journey.

But, the acceptance that I have struggled with of late is that of a personal issue, one of them being my illness and the restrictions that it so graciously provides!

Realising that my body can’t do what the head wants to often leaves me with a sense of loss and frustration, especially when the weather is nice! It’s so much easier to be ill when it’s raining and cold!

The process of acceptance takes complete honesty with oneself. No pretence and no hiding from the facts no matter how hard that pill is to swallow.

I’ve had to deal with this word of acceptance on different levels. One cannot force it to take place, but if you are open to it then it will arrive eventually one hopes!

I believe that the act of unconditional love is paramount to acceptance towards oneself or others. I think that’s why my faith helps me. Even when I am angry with myself I know that him up there totally loves me.

Along time ago, someone said that I needed God and they are right, I do.
I know it’s not the same for everyone and I certainly do not want to push my ideas onto you. We each have the right to our own thoughts and decisions. Yet, I find the knowledge of something bigger than myself who is on my side, routing for me, cheering me on a very comforting thought.

If in the end it is a load of crap, them whom am I hurting?

A few weeks ago, I met a young woman on the seafront. We got chatting about dogs and the conversation continued to which I asked her what she did as a living. She told me quite comfortably that she was a lap dancer. I wasn’t drinking my coffee at the time so I didn’t choke! All I could do was admire this young lady. She wasn’t ashamed of who she was. She totally accepted herself.

I am ashamed to say that a few years ago I may have reacted in a different way by being superior. But humility has caught up with me and given me a hard lesson. I may one day be able to share with you that lesson, but for now, suffice to say, I accept that I am not better than anyone else in this world. And my aim in life is to love unconditionally despite what a cliche that may seem and to accept both myself and others as I find!

Much love,

Fiona.

**** it to fitting in!

Caution: does contain some strong language and over sentimentality!

I’m not sure I’ve ever really fitted in to different social groups. I should really, as I’ve never been a rebel. The first time I stole something at nursery I ended up taking it back due the enormous feeling of guilt I had. It was only a small purple toy car, not even new!
No, I was the shortish plump kid with fuzzy hair at school. My only redeeming factor was that I didn’t have to wear NHS glasses. Having said that, I did have the buck teeth and a rather big nose inherited from my father of which the little bastards took great pleasure at calling me piggy across the playground! (Perhaps I should have continued with the psycho therapy!)
The greatest moment at school was when the leader of the really hard gang took pity on me being bullied and threatened to kill the ‘in girl group’ if they ever spoke to me again. Unfortunately, I wasn’t there to witness this scene but I was told that the leader of this ‘in girl group’ almost crapped herself. A sight that I would have loved to have seen! Maybe this is why I love to watch those films when the under dog wins or when the ugly fat girl gets ‘the boy’!
I then went to college. Well, I wasn’t going to stay at school, was I? College was great. The teachers were now lecturers and for most, you could call them by their first name! No one knew me here except the handful of other kids which came from my school. But to be honest, most of them weren’t cool either! Here, I felt like I was treated like an adult and I did fit in!
Those two years were to be the best and worst of my life. I ended up moving in with a bunch of hippies in a house just outside town. Now, you’ve got to understand that I was very much a middle class girl next door type who wouldn’t even steal an apple from the neighbours tree for fear of being caught. The move was out of necessity unfortunately. Life at this said middle class home was not great and my mental health would have deteriorated had I stayed. So, college found this flat within this hippy house. This was to be the best year ever.
Hanging around with dope induced hippy vegetarians was definitely a learning curve, but one I’m glad to have had. Here too I fitted in! So, maybe my initial statement at the start of this blog is not entirely true after all! They took me to their local pub, the seven stars where I eventually celebrated my first legal drink at the age of 18! They were all heavily into rock music with their long greasy hair. I had the shortest hair style possible but felt completely at home at ‘The Rock House’. The reason of course, for fitting in so well to this group, is because they didn’t fit in to the stereo typical 20 something’s group. They accepted me as I was and never judged and for that I will be truly and forever grateful!
My next social group was to be that of ‘the student nurses’. And once I realised that it was necessary to fit in by drinking pints of lager, I was away! Funny really, for that’s how my now hubby woo’d me ; by buying me a pint of lager! I was, and still am, a cheap date!
I suppose the next group was the ante natal group. I definitely didn’t fit in there! For starters, I was the only mother working as I had my first born whilst still training as a nurse. When the health visitor asked each of us how we were feeding our babies, I piped up that I left his bottle in the fridge so that he can help himself whenever he wanted! I never went back!
Hang on in there. Only 3 more groups left! Well 4 actually, but the expat group comes twice.
Next, was the ‘church group’. Now, I realise at this point that I could severely piss Christians off, but I want you to know that I am a Christian (and no, there will be no bible bashing from me so you pagans are safe), and my accounts are purely my thoughts and no judgement is intended so please keep reading.
Where was I? Yes, the church group. For many years this was the best group ever until I suppose I ‘got healed’. That is, had counselling! It’s inevitable that whatever group you belong to whether Christian or not, certain dynamics take place. And, as I became less focused on ‘my stuff’, I noticed things within the group that I didn’t quite agree with. Unlike the hippies, different opinions or thoughts weren’t so well accepted. I’m not a believer in ‘one size fits all’ you see, so it was time to leave – sadly.
Then on to the expat group! Now, if you want to observe human behaviour at its best, you simply must join this group! Both times I have been a part of this group, they have both involved the requirement to consume copious amounts of alcohol, stay up to ridiculous hours of the night/morning and to compete with the others on anything from your tennis back hand to which coffee machine you have. I also found it incredible the amount of expats whom frankly back home would be nothing, took great pleasure in being abusive to the lower classes whilst stating at the same time ‘how simply awful colonialism was’. I would say more but I know you are desperate for this blog to finish. Suffice to say, the expat life is not one where I naturally fit in, but the tax free status did mean that I got my long awaited new kitchen!
And so to the end. What is the purpose of this ‘**** it to fitting in’? Well, my last group which I only came to realise the other day is the ‘chronic illness group’. Ahhhh, you cry!
Well, it links to my post ‘freedom from I should’. Now that spring has sprung, I’ve suddenly become aware of all those things that people ‘do’ at this time. Open any women’s magazine and you’ll find the best ten tips to spring clean your home. Now I’ve already acknowledged that the need to do said jobs has changed from ‘I should’ to ‘I cant’, but it goes deeper than this. I’ve suddenly realised that I no longer fit in to society’s ‘normal’ domestic group. In this group, people may have jobs, go on trekking holidays, tour London for the day or simply go out in the evening with friends. Most of these things I can no longer do and even simple commitments like meeting a friend for coffee have to be cancelled at short notice, like today in fact.
In the past, by now, I’d have jet hosed my patio, planted bulbs for the summer, decluttered every room and all whilst holding down a job and looking after a family. These things which in the past I took for granted I no longer can.
Okay, get out the tissues! Don’t get me wrong, I’m really not asking for your pity. It’s just I no longer fit into this group either. Perhaps I’m a closeted rebel at heart and I’m finally being forced to ‘come out’!
So, I’m learning to accept my new group whatever that is called. Answers on a postcard please!
A group where there are a lot of members who too don’t feel as though they fit in. Maybe, you are one of them?
But, don’t be sad because we do have a group. We may not know everyone in it, but we do belong ,and our life despite its limitations does have meaning and we can ‘fit in’.

Much love,

Fiona.

ME and my road to fitness?

I came across this blog today and it is excellent! Definitely worth reading if you suffer from FMS, CFS, ME, or any other fatigue disorder. I am really impressed how the author has taken the illness into her own hands and is devising a strategy for full health. A very positive and informative blog!

Sarah at Saje

 

 starting blocks

 

Background

I managed to recover well from my first ME diagnosis back in 1996. It took time, years to get back on track but I managed to exercise regularly ( run 3-5 miles twice a week, Pilates, & Zumba on top of a very ‘active lifestyle’)

Last September I realised that I had more than a normal blip after running whilst starting a seemingly harmless cold. What followed was a continuous downward spiral/ relapse that was devastating and scary. I never saw it coming and never knew it was possible.

Purpose of this Blog

Sport, fitness and healthy lifestyle are part of who I am. Ironically, promoting it is even part of our family business! One of the diagnostic traits of ME (as opposed to Chronic Fatigue Syndrome) is that sufferers are exercise intolerant and almost all sound advice is that exercise should be avoided. Frustratingly, this…

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