A letter I wrote to my new partner..... Typical event for us

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I writing this cause I physically can't talk without melting into a pot of tears and frustration.

 

You ask me how I feel sweetheart, I feel trapped, trapped inside a young body that doesn't work the way it should do.

Trapped because after 29/30 yrs of being nurse, worker, mom, bread winner etc, I'm left sat in a bed with such terrible pains and sickness I physically can't even feed my kids. 

 

I know I'm lucky that my kids are brilliant, and they try to be as understanding as the possibly can, but it's impossible to understand what and how I feel, unless you living in this body/life. It's not fair on them either, Daniel never remembers me when I was well and I've never been able to do school or outside things with him, like I did with jordan.

 

I used to feel so sad for anyone who suffered such bad depression that it left them emotionally drained and feeling so worthless that they would consider taking their own lives... I've lost close people to that illness and was determined to never allow my thought process to ever get that bad.... Today I can actually understand why they feel that they can't carry on.

 

It doesn't matter how much support, love, help you get. NOTHING will ever take this illness away and to remain stress free, and free from infections, upset, worry etc, is physically impossible........ Life isn't like that, there's always someone or something out there to attack you....Especially when your feeling so ill.

Oh and best thing about it, is there is NO cure.

 

Physically it's not one of my worst attacks, but it is bad. 

I woke this morning to Daniel shaking me to see if I was ok (about 10am). I could hear him talking to me, but couldn't communicate back properly.... It's Like I was in glass house and people look in but can't hear what you say back (best description). 

Anyway I must of fell back to sleep when Daniel woke me again with a cuppa. It was 12.30(ish) and I had been in bed since 10pm last night.

 

I was exhausted and as always turned to check my whatsapp. I thought the tiredness would dispel enough for me to get up and shower (was going to worry about shopping and getting you at a later point). 

I remember texting you and going downstairs to make some toast.

 

I must of eaten some of it (although that bit of the day is a blur), and fell asleep again.

Woke up about 2.30pm feeling all hot, with a horrible cold sweat on. My muscles felt like I'd done a 15 mile run the previous day with no training, and my head was pounding out my right eye (always affects the right side more).

After spending the next 30 minutes throwing up, I literally crawled to my bed and collapsed, I know I texted you something and I think it was very full of self pity (which I normally don't allow myself to have). But I knew it would only get worse.

 

Fibro is one of those things that doesn't give any warnings. your body, for some reason, thinks it's being attacked by a virus but not sure where??. This In turn sets ALL your immune responses off and so you are physically sick to remove any chance of gastric viruses, your muscles react by going into overdrive and swelling up, causing such pain it hurts to lie in one spot for too long (and I have a special fibromyalgia mattress on my bed).

My brain feels like it's swollen to the size of a elephant and is trying to pop out my eyeballs due to pressure, and I can't focus or concentrate on anything around me for more than 30 seconds without it hurting my ears or eyes with light & noise.

My body then shakes and goes onto survival mode by trying to stop me from getting dehydrated or going into shock and I fall asleep to the point I can't be woken up easily.

 

I've been told it's very frightening to watch, however it's no more frightening than having to experience it on a regular basis.

 

I'm lucky cause I understand the human body, and know why it reacts the way it does, so I avoid anything that will aggravate or set the confusion off. However what I or any medical expert doesn't know, is how/why or when this illness will strike.

 

I try keep positive and eat really healthy, ensuring I get plenty of rest, yet, although the attacks are getting fewer, they still knock my world about when they strike.

 

I'm sorry if I come across as emotional, but when you look forward to something so small, like going out to shops or seeing a friend, and your body doesn't allow it, it destroys your confidence and emotional state over the years.

This is why I can't plan anything and have lost so many mates in the past, people just don't believe you can get so ill, so suddenly.

 

Like I say, I'm not going to ever do anything bad, I couldn't ever put my kids or parents through that. 

But my heart really goes to understanding why people do things irrationally on a healthy body but broken brain, never mind a body that just stops working on a regular basis and affects your emotional state in the same way.

 

That might not make much sense, but it's the easiest way of trying to explain something that has taken my kids,my parents daughter and my own life and happiness away on a regular basis since 2010

 

The attack are definitely getting easier over the years, but I don't think it's cause I'm getting any better. Rather I think it's cause I'm getting used to the pain.

 

Sadly because there is no genuine infection inside me, no pain killers work..... Antibiotics can't target illness cause they don't have the knowledge to treat it and that leaves me with no other choice but to take pain killers to enable me to sleep deeper than if no pain tablets were taken.

 

This might explain some things, but it will never stop people's doubt or perception of you as a person. So many times I hear the same things said

"Try remain positive and stress free!"

 

"Get plenty of rest before I see you, that should help!"

 

"Are you really sure you can't just try getting out the house, it would make you feel better!"

 

Etc, etc

 

Well, I don't even bother replying anymore to these comments. It's like telling someone with cancer to get over it, or another person with depression to "cheer up"!

 

I have to laugh at some of my doctors and medical consultants advice in the past. They admit it's a mind blowing illness that is becoming more prevalent around the world, yet they still don't think to go educate themselves about it..... As long as it doesn't affect them, it doesn't really exist kinda approach.

 

You, however, have always been not only supportive towards me but also gone out your way to try understand what is involved. I really do appreciate and love you for that, but I will always feel that by having me in your life, I'll actually hold you back from things you want to do.

Not that I'd EVER say you couldn't do anything, far from it, I'm all for everyone making the most of their health and actively encourage it to myself and others when I can. But because people start to feel guilty cause they are doing and having fun, whilst I sit at home with my head down the loo or worse.

 

I know if you saw me this way, you'd probably think differently about me.. You know how you feel when you've got something like flu/sickness and migraine together and couldn't give a shit how unattractive you look??? Well that's me on a regular basis.

 

I'd say I now get about 6-9 bad spells of this a year and the rest of the time it's just feeling drained and exhausted for no reason. 

I am beyond desperate to return to work, especially since the council and disability have cut my benefits allowance (like everyone else that's sick in the country) by 30%. This leaves me with more worry about finances and the inability to deal with outside prejudice from fucking idiots that think that being like this is a doss and easy life.

 

I had an amazing life, I was earning a good wage, had a stunning flat, just me & kids, had my health, social life and all the freedom a single mom can have...... This is the time of my life I should be enjoying with my partner or family/friends.

I've worked so hard to get my qualifications and experience to get to the level of nursing sister, then it get taken away from me for no apparent reason.

 

It's been 6 years now and I've accepted that this is my life. I don't care that my last marriage didn't work cause the man was a lier and deserves all he gets. But you, and my kids don't deserve this.......  That is why I really want you to think carefully about the future.

 

I will never be one of those people you can just whisk Orr for a evening or holiday and plan outings etc with. I'll always love day by day assessing how I feel and if I can make it out the home etc.

 

I used to push myself, in the past, to get out and try overcome it, however that lead to 3 strokes, the last of which nearly killed me and left my bed bound for 2 years.

 

So sweetie, this is my issue.

I am not here to hurt, lie to you or cause upset, far from it. I couldn't take that stress myself to be honest. But I will totally understand if you want time to think about things.

 

This is not something that I write likely and it breaks my heart to just open up about it... But it will hurt a lot more if a year or two down the line you walk away because of my illness..... Bearing in mind you've never seen it first hand.

 

So I want you to do something for me. I want you to take some time away and think things over. I'm never going to get over this and I might never be able to return to work. It's something I choose to ignore whilst I'm feeling ok, but hits me like a wet fish in the face, during times I'm sick.

 

I make light of some of this but that's not to undermine this illness, it's just my personalities way of dealing with anything negative.

 

I'll always love you, that won't die down. But I love you enough to not drag you into this.

 

Please please take some time and I'll talk to you soon. Xxxxx