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A typical day 

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Yesterday was a typical day. With me exhausted although I managed to do very little.

Morning :  

Woke at 7.15 am.  Had a cereal bar and water for breakfast. (Keep these by the bed.) Then sent a few text messages. Then had a quick look at Twitter (thats usually where I get any news about whats happening in the world). And re-tweeted a few tweets by other people to help raise awareness about ME or CFS. I don’t manage to talk to people on twitter much. It’s usually too exhausting for me. But retweeting some things makes me feel I am doing something. Taking part. 

 By 9 am I was pretty tired and that was all I had done. Oh – and I had brushed my teeth too.  The headache, which had started after about two minutes of using my mobile phone, was now quite bad. (Even thinking and typing a text can be an exhausting activity.) And the exertion of brushing my teeth had made me out of breath and the movement had made the headache even worse. I had to give in and rest. Lying down in bed again. And took painkillers. 

I had to rest in bed until 3pm. Lying down, doing nothing, no stimulation at all, sleeping much of the time.                   6 hours rest/sleep needed after 90 mins of “activity”.                                                      I put activity in commas because in no normal well person’s world would it take 90 mins to send 4 texts and 4 retweets on twitter. And brush teeth. 

Afternoon :  

Got up around 3 pm.                           Managed to freshen up using body wipes (wet wipes). And got dressed. Eat a banana and a babybel cheese for lunch. And drank more water. Lots of water. As just the exertion of freshening up and getting dressed made me out of breath and thirsty. And I was tiring again.                             Tried to fight the urge to rest – as I was hardly up any time. Tidied up the bedroom, opened window and folded the duvet back to air the bed.    Forced to rest as now very tired, even more out of breath, and chest heavy. Plus neck pain. 

Sat on sofa in living room for about an hour or more. Just resting, with neck and head propped up and supported with cushions (to try to ease neck pain). I was so tired again that I wanted to lie down on the sofa. But the feeling of weight on my chest got worse when I tried this.

By 5 pm I wasn’t really feeling much better. But I needed to eat something more. A sickly headache was starting up,  and I was aware that I hadn’t eaten very much today. Which was probably now causing the headache, or making it worse. (I always feel awful if I go too long without food.)   

In the kitchen I just put some cheese and cold ham on a plate. With some cherry tomatoes. And a muffin. Ideally I would have liked to make a sandwich – but I couldn’t stand long enough to do this. So it was a case of just grabbing what I could.  After eating the food I felt a bit better. And was able to make a cup of tea.  This helped ease the headache a bit  – but the other symptons were still there. 

I wanted to do something (anything) to try and distract my attention away from the symptons. This isn’t easy to do. Because doing anything physical is very hard with the chest symptoms. And usually increases them and I end up even more breathless with a worse “weight” on the chest. Or a tight restricted feeling.  Reading wasn’t possible as I knew it would trigger more headaches. And it is hard to read and remember any of it with the level of “brain fog” that I have with ME.  Watching any TV was out of the question too. As i couldn’t tolerate the sound, or any bright colours or movement on the screen.   

So I eventually decided to listen to a recording from a website from an American Life Coach/trainer/motivational person. I had come across this on twitter and had saved the link, as thought it might be helpful.  To be honest, I have probably saved hundreds of interesting looking links to things over the years on twitter. But I haven’t been well enough to read or listen to most of them.                                             With ME – the gap between what I would like to do and what I can actually do is huge. And a big source of frustration. 

Early Evening : 

I listened to the 30 min recording. And it was good – I liked it. I immediately forgot most if it of course (damn brain fog . . .).  But I will listen to it again for sure.  It was about taking full 100% responsibility for everything that has happened in your life. Especially the bad stuff. And losing any kind of “victim” mindset.  It was good and I can definetely see the value in this. As I know I am holding onto a lot of anger, resentment and distress. And I still have so many nightmares about the bankruptcy (which is still ongoing). And about bad experiences with medical people. Plus the attempted PIP claim and terrible experience with Atos (nurse from Hell) just about finished me off. 

But maybe even listening for 30 mins was too much for me. Not only did my headache and neck pain come back with a vengeance, but my head was spinning. And my mind racing with the memories of all the bad things that have happened over all the years I’ve had ME. All the losses. All the medical mistreatment. The possibly ill-advised Bankruptcy (bankruptcy in reverse really). My marriage almost breaking (several times) with the strain of everything.   Then my brain was running through memories from the Property years – some rubbish letting agents, bad tenants (one actual tenant from hell), scum tradesmen, etc etc.  All bad memories. 

My energy just totally crashed.              And I had to take more painkillers and get into bed. Just as my husband got home from work. Luckily he would make the dinner. (He always has to make the dinner, and I’m really grateful for this.) 

I didn’t manage to get up again until 11.30 pm. Still felt rough but was hungry and thirsty. Hubby had eaten his dinner ages ago and was about to get ready for bed. So I warmed my dinner up in the microwave and eat it at midnight. Not ideal . . .  But very grateful that hubby had cooked it. And also grateful (or relieved) that I had been able to get back up and eat.  There have been many nights I couldn’t do this at all. And had to eat in bed, sometimes in a lying down position. Or just too exhausted to eat at all.  Over the last few years. 

But limited and small as this day was – I would rate this as an OK day. Out of a choice of Good, Bad or OK. 

I have had much worse days than this over the last few years. 

And I have had better days too.

And hope to have more better ones. 

But it shows how far removed our lives are from normal levels of ability when we have ME.  In what other illnesses  would a person class their day as OK when all they could manage to do was : 

Send a few texts messages, be on twitter for 10 mins, up and out of bed for only 3 or 4 hours (much of this resting),  eat some food, listen to a 30 min recording, talk to husband for about 20 mins.

Its not much . . .                                           But as I mentioned – I have had many poorer days than this. And I’m very grateful for the better days. 

 

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My Life so far – NOT what I expected

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image

I save a lot of pics like this if I see them on twitter or somewhere – just because I like them.  Mainly funny, upbeat,  philosophical, inspiring,  motivating etc.
Something a friend said to me in a text message recently reminded me of this picture.
It certainly describes my life.

But I’m not OK with it – yet. That will take a while.

I’m 55 – and now have nothing.

The post from 7 Feb 2015 titled Battered, Bruised and Bankrupt explains.

When I say nothing – I mean nothing financially. And no security.

No money
No income
No savings
No ability to earn any income because of all the ME symptoms severely affecting my life. (Certainly not just now.)
No Benefits – I am not well enough to deal with the process. Nowhere near well enough.
No GP ( or as good as no GP).
I do own 50% of this flat I now live in with my husband – but at the moment this is 50% of nothing (financially). As it has a large mortgage on it and there is no equity in it.
And we now have nothing to pay off the interest-only mortgage with in 8 years time. We did have various mortgage Endowments – but they were taken from us by the Trustee In Bankruptcy and cashed in.

Worked hard since 17

With Commercial Union Assurance (now part of Aviva) for 19 years.
Then Prudential for almost a year.
Then NTL ( now Virgin Media) in telecoms for 4 years

Studied for professional qualifications in Insurance (Life and Pensions) and Financial Services (for Compliance work).
Obtained A.C.I.I ( ie. Associateship Of The Chartered Insurance Institute) in the Life & Pensions branch early 1980s .
Obtained MLIA {Dip) and FPC (Financial Planning Certificate} in early 1990s.
During the early 1980s I also worked in pub jobs for 3 (sometimes 4) nights a week – on top of my full time job. I did this over a period of a few years and think I worked in 5 different pubs.
The reason – to save up for my 1st flat. For the deposit, costs and fees, furniture, etc.
I was keen to do this but not have any debt when I moved in.

All these jobs/careers I had to give up and resign from due to my health. And all the symptoms of what I now know to be ME (or CFS as it was called at my diagnosis).
NB. I left all these jobs with nothing – even after 19 years in Commercial Union.
There was no help or support from my GP at all. And I just wasn’t well enough to be able to push for more help.

Finally got diagnosed with what was called CFS in 2003.
After more than 12 years of going back and forwards to GP – but feeling I was being treated like a time-waster each time. As if I was just being lazy.
Appalling treatment really.

By 2004 I had to accept I just couldn’t risk working for an employer again. Assuming anyone would have me . . .
Although I was feeling a bit better again after some rest time, I still had a lot of symptoms to cope with. I knew I could only work when I was able to. And would often need big rest and recovery periods.
No employer could be expected to cope with this.

So the only option left was to work for myself.

In 2004 I started up the Property stuff seriously.
Buying the 2nd flat to rent out (ironically the one we now live in and are very glad to have !).
By using savings and remortgaging our home I got started.
Then managed to build up to owning 15 flats by 2014.
Mainly by remortgaging them or using additional borrowing to raise funds for the deposit, fees and costs to buy the next flat. When the value of the property had increased enough to allow this.

The point of this was to get to a point where I would have been able to sell off a property every year. Or maybe every 2nd year.
And the profit would give me an annual income.
(It is very hard to make any real monthly income from the rent – there are so many expenses and things to deduct from it.)

Ironically, if I had done nothing at all we would now be much better off financially.

Hindsight again . . . . A totally useless thing.

Remortgaging our home was a calculated risk. But it was the obvious and only option to use. Neither of us have ever had any inheritances or lottery wins !
It had loads of equity in it at 2014.
Partly because of the increase in the property market. But also because we had bought it in 1998 with a very small mortgage. We put down a large deposit of 65% of the purchase price.
This was done partly by saving up very hard for a few years and going without most things. Really scrimping on everything.
And the reason for this – our future security . . . .

Now at July 2015 – Bankrupt.

Husband dragged down with me – as some properties were bought in joint names.
But he has been totally supportive and never blaming me. And I’m so grateful for this.
So, the loss of everything – apart from the flat we are living in.
Oh, and we were allowed to keep our beloved BMW. Because it is so ancient now ! (Think I mentioned this in a previous post.)

As I explained in previous post, the Bankruptcy was voluntary because of my health.
I couldn’t go on.
And this was the only way, as I understood it, to give away all control and responsibility for all the properties. And hand over all dealings with everyone to a Trustee In Bankruptcy. ie. All dealings with banks, letting agents, tenants, insurance companies, etc etc.

It hasn’t worked out quite like that . . . .

But that’s life isn’t it ?
You get told something but the reality turns out to be quite different.

But at some point all this horrible Bankruptcy stuff will come to an end. And I will be able to “relax” and have some peace of mind.
No idea when this will be – impossible to get any clear info in writing.
And I will have the energy (well, more than just now) to hopefully find a decent “ME friendly” GP.
Not really for treatment – not expecting miracles. But just for some symptom control and support.

At the moment I have none of this. Just nothing at all.

But I’m still here.
And there are many people out there with ME or CFS who are much much worse than me.

So I’m grateful that I’m not even worse than I am. And that I do have “mini bursts” of energy. And can do some things. Even if the recovery time after it takes days . . . !

PS.
Apologies for any typing errors. I tried my best to check it before hitting the publish button.
But I really struggle to use my laptop or tablet etc. And am all out of energy now.

Battered, Bruised and Bankrupt

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Voluntary Bankruptcy

This was the biggest and most life changing event which dominated most of last year.
And is still going on now.
I became voluntarily bankrupt w.e.f September 2014.
Or “in Sequestration” to use the correct scottish term,

I had to make this hard decision because my health was so poor. It had been steadily getting worse over the last few years and I was living a “non-life” really. In bed most of the time (maybe 80% or 90% of the time) struggling with all the horrible ME symptoms (an ever lengthening list). And at the same time trying to keep the property stuff afloat – mainly from bed. With my mobile phone for texts, emails, internet banking. And of course – actual phone calls. But phone calls had to be kept to an absolute minimum as I was too ill most of the time to carry out a business type phone call, or remember accurately what had been said . I relied mostly on emails as I could take breaks in a way you can’t in the middle of a phone call. Plus I needed a written record of almost everything – as my brain fog was severe.

But this was in no way ideal. You can’t deal with everyone purely by email or text. Plus a simple email that should take maybe 20 mins would often take me 4 hours to type. And that could often take me a day or two to recover from the exertion of doing even that.

My “PEM” or “PENE” (post exertional malaise / post exertional neuro exhaustion) has been severe and punishing.

Sometimes I would manage out of bed and get to my desk in my dressing gown and slippers. Looking like an unwashed wreck. Often I had to choose between washing/showering and getting any work done.
Almost every small bit of energy I could muster up had to go on work/property stuff. But over the last few years, I had built up a massive backlog of stuff that I would never have gotten on top of.

In the end I had to choose between my health and my ME getting even worse – or giving everything up.
When I write it like this, I can see there really was no choice.
But I went thru a lot of mental agony and anguish before deciding. Even started to have panic attacks at one point.

Doing this stuff had been my life for the last 11 years.
And I had struggled on for a very long time – because you can’t just get rid of 15 flats overnight. And I knew the consequences of “giving up” would be awful.
It wasn’t like resigning from my career in insurance in 1997 because of my health, after almost 20 years with the same employer. And walking away with nothing. And that door just closes behind you.
That was simple compared to this.

This has been terrible, and caused my health to go even further downhill. Which was one of my fears about doing it.
But it had to be done – and it was done to give myself a decent chance to improve again in the future.

When everything is more settled, and I get to a stage where I have some peace of mind.
I feel sure I can start to improve then.

I’ll probably write more about this in later posts.
As it has been traumatic, and I do need to get stuff out.

 

Moved house

For 2 reasons :

1) I wasn’t managing in our home very well any longer.
It was a semi-detached house with stairs (obviously). The stairs were hard. I could manage them some days – but with bad exhaustion after. Other days I couldn’t manage at all. My bedroom had been moved into a downstairs room some time ago – but the bathroom was still upstairs. (Had a downstairs loo, thank goodness.) My office was also upstairs (and I was hardly managing into it). The kitchen was too far away from the bedroom and living room for me. And when I did get into it, I often couldn’t stay in it for more than a few minutes at a time – as there was nowhere to sit down. And various windows throughout the house (incl my bedroom) I was unable to open – which would drive me mad.
It had a garden of course, but I rarely managed to get out in it over the last year or two. Any “good” days were spent trying to work and keep everything afloat. Not every one of course, but most of them.

2) The other reason was that we knew we would later voluntarily hand over our house to the Trustee In Bankruptcy. It would have been “taken” off us anyway. We had lived in it since 1998 and there was plenty of equity in it. So we knew it would be sold off to take the equity.
It has just gone onto Rightmove for sale this week. And it looks so sad and empty.

A house move is a stressful event anytime.
We moved well in advance of the bankruptcy taking effect. I actually moved into the flat before my husband at the end of May 2014. As I was desperate to get away from the house, its stairs, and all the other problems.

But as anyone with ME will know – a house move takes a huge toll on your health. Even when it’s a happy house move.
But in these circumstances . . .
I’m just glad its over – and I pray that we don’t have to do it again.

 

Had to change Banks – twice

How would I describe doing this (with ME) ?
Complete bloody torture . . .
The 1st change was recommended by the financial advisor and done ages before the bankruptcy. Bank manager clearly informed of probable future bankruptcy therefore ensuring everything done properly.
It took me months to get all the direct debits set up again – as I can hardly manage to tolerate using the laptop, or phone, etc with my ME being so bad.

Everything was just getting settled and running fine – then the bank decided that they were freezing and closing down all accounts (nationwide) for any bankrupt people. No notice was given at all. It just happened instantly.
This threw us into chaos.
Husband’s salary had just been paid in a week before this happened and we couldn’t get it back out. Well, we did eventually. But with a lot of hassle.
And trying to get a new current account once you have actually become bankrupt is very difficult. (No surprise really.) Most banks don’t want to know, and I actually thought we weren’t going to be able to open one at all at one point.
It was chaos, and mega stressful with ME.
Because you can’t pay many things without a bank account. And, as already mentioned, I am very limited in even being able to make phone calls. Or use the internet. And physically going out to places to try and pay things in cash was totally beyond me. (Still is most of the time.)
We now have a new account up and running (thank god).
But almost everything (DDs etc) have still to be set up all over again.

Not easy . . .

 

Homeopathic Hospital (or Centre Of Integrative Care)

Had a 5 day in-patient stay in January 2014.
This was a huge disappointment and actually resulted in my condition getting even worse afterwards. Especially when I read the doctor’s report a few weeks later.
There were many good things about the stay – I must add this.
Eg, the company of the other patients, getting good food at a regular time, the garden view from my bed (and got out into it twice), some of the meditation classes, a marvellous massage (called a Bowen Therapy massage), a great adjustable bed, a chair in the shower area to sit down on.
But there also a lot of odd, weird things that I tried to ignore and block out while I was there. This was hard work to do mentally, as a lot of things didn‘t “feel“ right.
But I didn’t speak up while there.
Partly because too exhausted – the whole effort of getting organised and getting there had taken its toll. And my husband was ill too and I was worried about him.
And the brain fog doesn’t make it easy to think clearly or express yourself when needed.
The other thing was – I didn’t want to be labelled as being “over-anxious” or having a “depressive/negative mood”. So I just kept quiet about things I was concerned or confused about.
But when I read the doctor’s (fairly short) report later – I was horrified. Angry, upset and despairing at what a waste of time and energy (mine) it had turned out to be.
Most of my symptoms had been ignored. And I reckoned about 80% of what I had said (or tried to say) had been dismissed or ignored. Or I hadn’t been allowed to talk about some symptoms.
Looking back – the total time the ward doctor spent with me was maybe 45 mins on the 1st day. Out of a 5 day stay. For 25 years of illness . . .
And a list of symptoms that was getting longer and longer. And more severe.
I had been so “grateful” and “positive” and “upbeat” while I was there. And on the last day, And even when I was just home.

But it all knocked the stuffing out of me.

I tried to reason with myself that I maybe had been expecting too much. But I just expected a doctor/doctors who had some knowledge and understanding of ME/CFS. Then I used up even more energy trying to go back over how it had gone so wrong, why had I not been able to make myself understood, did I not speak clearly enough, had I been speaking too fast (trying to get 25 years of history out remember), etc etc etc.

But it was damaging.

 

Have no GP now

Well, that’s not totally correct. But as good as.
The combination of having moved house to a different post code (although I’m actually closer to the surgery now), and the fact I haven’t been able to get into to surgery since 2011, means that I was told in October 2014 that I had to find a new GP.

I’m still reeling from the phone call that day.

A GP that I had never met or even spoken to before phoned me after my husband went into the surgery before going to work that morning. To ask for better (any) painkillers for me. My headaches have been very bad the last few years (mentioned while in the Homeopathic Hospital, but not taken seriously). And I had been awake most of the night actually crying with the pain. One of the worst nights ever, pain-wise.
The GP who phoned was abrupt and aggressive, wouldn’t let me speak, and I’m not sure she even understood what I was trying to say part of the time. She had a foreign accent.

She used phrases like :

“What’s wrong with you – are you housebound or something ?“
(Re why I haven‘t got to the surgery since 2011)

“We only do home visits for elderly people or people who cannot walk”.
(I didn’t want a home visit – just some effective medication.)

“If we come out to visit you and find out you CAN walk – we will be very angry with you.”
(I didn’t want a home visit but I was speechless at this.)

“I am noting your records now that you are not to be given any more prescriptions.”
(She talked to me like I had done something wrong. And was therefore punishing me.)

“There’s no rush – just within the next few days.”
(Telling me I had to change to another GP surgery – despite me trying to explain I hardly managed out, or even to make phone calls most of the time.)

And it went on and on.

I was in tears (of frustration) after it. And my heart rate felt like it was thru the roof for days later.
I have been with that surgery since 1987 and l don’t think I’ve had a home visit (or even asked for one ) in all those years.

 

Asked 2 ME Charities for help in finding a new “ME/CFS friendly GP”

1) Most recently (a few months ago) :
Paid £20 to join one and used a lot of time and energy emailing their advocacy worker. To explain in detail how limited I am and why I was asking for their help with the GP issue.
She was very nice, but explained she had a big backlog of people with ME needing help. And couldn’t really spend any time with me at this point in time.
She did mention one GP but I don’t think the practice is going to be suitable for other reasons. Even if he still works there, which she wasn’t sure of. And I would still have be a lot more well than I am just now to be able to make enquiries, or go there.

2) A few years ago :
The other charity (or maybe its more of a support group) – I used to be a member of years ago. But only managed to go to 2 or 3 meetings.
Anyway, I asked if I could pay the annual membership and rejoin. And explained my main need was for help finding a decent GP.
(This has been a big problem for me for years.)
I had hoped that somebody/anybody could just give me a recommendation for a decent one. I got an email reply just suggesting I come along to their next meeting – although I had tried to explain how limited I was, and rely mainly on email. I emailed back a few times asking could I pay their membership and rejoin anyway – but they just stopped replying.
So I gave up.

 

Car broken down at end of road – 5 weeks ago

I went into bankruptcy for health reasons.
To relinquish all the properties, and all the work and responsibility that went with them. And all the dealings with Letting Agents, Tenants, Banks, Mortgage Lenders, Tradesmen, Factors, Insurance Companies, etc etc etc.

It wasn’t so much for financial reasons – although debts had certainly built up over the last few years with me not being able to deal with things well, or quickly enough. I was making losses and haemorrhaging money.
But before the process started, everything was getting paid ok and nothing was in arrears. But it was a struggle trying to juggle it all.
Our assets well exceeded any debts – on paper anyway.
After the process we are left with almost nothing.
The Trustee is allowing us to keep this one flat to live in – mainly because it has a big mortgage on it and no equity in it.
But any life assurance and mortgage endowments were taken off us and cashed in.

But – the one bonus for us was they allowed us to keep our beloved BMW.
Only because it is so old – it is a Y registration. Which is roughly 15 years old I think. And it is probably worth less than £1000.
I have always loved this car.
It is the most reliable car we have ever had – and it looks good. And is so comfortable and secure to drive (when I’m able to.)
I was forever boring people with how reliable is has been.

5 weeks ago it broke down at the end of the street . . . .

A major suspension issue – involving a lot of labour time to fix (as well as an expensive part). To have it fixed by a BMW dealer or even a smaller garage would be unaffordable. The repair would cost more than the value of the car itself.
However, we are lucky that a friend of husband’s is working on it. Which will be much cheaper. But its a very slow process as he can only do bits at the weekends. In daylight. And the weather hasn’t helped.
But it will get fixed – eventually

 

– – – – – – – – – –

 

This blog post has taken me ages to write. I changed it so much. And didn‘t want it to be so long – but felt the need to get all this out.

And it will be the first that most people in my real life will learn about the Bankruptcy.
I have only managed to tell a very small number of people. Mainly because my health has been so bad and I have hardly managed to see anyone.
(And it’s not really suitable for a text message . . . )

I’ll probably write more about much of this stuff in future posts.
I’m desperate to be writing again.
It is a struggle as I’m still feeling quite unwell much of the time. And just trying to think and concentrate is exhausting. And using my laptop feels like torture some days.

Doing this post will no doubt wipe me out for days. I feel totally wrecked after doing it.
But in this case, it will be worth it.
The more I can pour all this stuff out (onto this Blog) – the more it is out of my head. And creates “headroom” for better stuff.

That‘s the plan anyway . . .

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