Understanding – At last

After years of complaining of pain and numerous trips to Hospital. I was referred to see the Rheumatology department at North Manchester Hospital. Saw a very nice Doctor who really did know what he was doing and asked alot of in depth questions. It was amazing for someone to actually understand what I had been living with and going through for years.

Was poked, prodded and examined.

The Doctor has diagnosed me with the following:

Fibromyalgia
Sleep Disorder
Chronic Fatigue
Irritable bowel syndrome (IBS)

He advised that all of these along with my Autism, Hyper-mobility and
psychological issues (Anxiety & Depression) are all intertwined.

They are Chronic conditions with no known cure. So is now a process of how to manage the symptoms.

I am being referred to Pain Clinic, Physiotherapy, Hydrotherapy and
Psychiatry. He will be writing to my GP to request that I go on sleeping
tablets and to increase the medication dosage that I’m currently on as
well. They took some blood for testing to cover the bases, but will not need to go back and see that department again.

There was a student Doctor observing my appointment and had apparently never seen someone whose joints where so bendy. So least I’m helping future generations of Doctor’s learn if nothing else!

It really is a genuine relief to get these conditions diagnosed and have someone to listen and understand. I had only been expecting a single diagnosis of Fibromyalgia, so to come away with 4 different conditions was not only a complete shock but also a validation of the fact that I really am not very well. I had thought that all the symptoms I had were normal and the pain I experience is what everyone else feels. It wasn’t until I had been diagnosed with Autism that I have begun to realise that it wasn’t normal.

Its strange having Autism and not feeling, experiencing and expressing myself as other people would. Its very hard to explain, what is normal for me is not normal for the wider community and vice versa.

I have tried to express myself and tried to tell people that things were ‘not quite right’ for years but I have either been bullied, fobbed off, taken advantage of or just plainly ignored. So to prevent myself from having to experience those again I just shut down, closed myself off and told people what they wanted to hear. However since my Autism diagnosis I have been learning to try and express myself better and this has led to these new conditions to be diagnosed to join my long list of other health issues. Now it’s a case of learning how to manage the symptoms and conditions.

Over the years I have learned to mask and hide things and to just keep pushing through them. Now that the health professionals are telling me that yes – what I am feeling and experiencing is real, and not to try and hide it or bottle it up. I worry that people will think that I’m making things out to be worse than they are because they weren’t an issue before.

It’s a lot not only for me to take in, but for my friends and family. At least we have some understanding of what is going on.

Changes?….

I’m rediscovering the world and myself since my autism diagnosis. Learning a lot about Autism (still a lot to learn) and finding that lots of my little quirks are often ‘Symptoms’ of Autism. I think i made need to change the name of my blog, as its no longer a road to recovery. I had thought that I had nervous breakdown in 2013 and have been trying to get back to how i was before then. Since my diagnosis I’ve discovered that how i was being and reacting to a lot of things in life was me ‘masking’ or ‘camouflaging’.

I’ve always known that I see the world differently to others and previously when i have said things I’ve either been ridiculed or put down. So haven’t said anything for years and copied how other people react, but now I need to learn myself and the world all over again and to accept and allow myself to feel the way I do.

So Maybe it I should rename my blog “Rediscovering the world” or “Me and Autism”, “My autism journey”.

I should have my final autism assessment by July 2018. Which will make it a year and a half to fully, pin down the challenges and hardships I face, hopefully making things a bit easier.

 

Losing grip on reality

I feel am losing my grip on reality. I just don’t seem to know what is real or what i have dreamed / made up / imagined. It’s a bizarre feeling. I seem to have lost the ability to put things in chronological order / timescale. Things that happened weeks ago seem like yesterday and things that happened today/yesterday seem to be from weeks ago. I don’t know if this is a coping mechanism or something else. Am getting confused with things that have actually happened and things that i have dreamt and imagined. I know i’m not losing my mind but my mind just seems to be a lot more jumbled than it normally is.

I Struggle with getting things done, always thinking I’ve got plenty of time to do it and then realising that i don’t. I’m stressed and worried because i feel like i have so much going on at the moment and in reality when sitting down and working it out, its not a lot 2 or 3 big things and there’s nothing i can do straight away its waiting for appointments or waiting for the correct time to arrive. When I was ‘well’ before my breakdown, i was working as well as coping with everything else and now i cant seem to 2 or 3 things. It is so depressing and humiliating. I know i’m unwell and not in great health but it just feels wrong and makes me feel guilty and makes me feel like a failure and i’m letting everyone and the world down. I didn’t ask to be Ill and don’t like asking for help, but know i’m struggling. It’s very difficult to ask for help as i don’t know what help is needed/required or what is available.

I’ve recently restarted counselling and this may be what has thrown me out of whack lately as we did talk about a number of different things in-depth. Its scary being scared of everything and talking about it as it really does make you think you, you are crazy.

On the flip side there has been some good things happening.

  • Restarted counselling, I know its small steps and its working on one problem at a time, but anything is better than just stopping and doing nothing.
  • Under going tests for Autism It’s not another thing I suffer from, but a solution or answer to why and how i react / think of things. And so far things are making a lot more sense in regards to this. Have only had one diagnosis session so far and the result was that i have autistic traits in all 4 areas.

It’s OK to be Me

It's ok to be differnt..

Well I’ve had 2 sessions of counselling so far in my current round of treatment. A number of things have come up that i’m currently working through.

I’ve got to encourage myself and teach myself “Its OK to be Me”

I’m a very sensitive person and take almost everything to heart, during counselling we worked out that rather than being myself. I’ve tried to please everyone and change who i am to fit in with other peoples perceptions of how i should be. This isn’t helpful or healthy. This is a very difficult post to write as it covers some of my most sensitive vulnerabilities, so apologies if i ramble on.

Appearance

This is a big one, I have never been comfortable with my appearance for numerous reasons. My hair when it grows long starts to curl and as a child i was teased a lot about it. Didn’t matter if i tried to gel it or style it, it always ended up curling. Always been told people would love to have curly hair, but for me I hate it. So much so now that its just easier and less stressful to shave it all off and have a skinhead. My clothes and style have also been an issue, what i find comfortable or stylish the majority of people wouldn’t be seen dead in it. This did results in sometimes being called names and some clothes were never worn again because of it. I have three very large scars on my knee after having a full knee reconstruction in 2011. I feel humiliated and ashamed that they are there and tend not to show them off. So Don’t wear shorts and always have my legs covered up. Nothings has happened or be said to me about my scars, but when i have gone out in shorts (very rare) I always feel that people are starring and talking behind my back about it. My Weight and body shape is always a concern for me. My weight tends to fluctuate depending on my health, and again I’m just not comfortable in myself.

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 Asking for Help

I don’t like asking for help, it makes me feel humiliated and ashamed. I Feel its a sign of failure asking for help or accepting help. Having numerous physical, mental and learning difficulties, i often have to ask for help in my life. It upsets me that i see other people who are able to do things without help, wish I didn’t need help, but i know i do.

Health

I’m not clumsy, i’m not accident prone, but if anything can happen it will to me. I broke my leg rolling over in bed. I Was hit by a truck while walking on the pavement. I Just seem to go from one medical disaster to another. It affects my life so much, from social activities to work. It is so embarrassing letting my friends and family know that I’ve been injured or am unwell yet again. It has become a running joke “Only You.” Having both long term physical issues and mental issues, symptoms tend to get crossed and confused. After a nasty fall in which i fractured my skull, i lost my hearing in my right ear. But i didn’t know until 3 years later after a different test for dizzy spells showed it. So i really don’t know what is physical or mental anymore.

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Dyslexia

I Have always had issues with my reading and writing from Primary school to now. It means i’m not as quick as everyone else and do need extra help in almost everything. A lot of people don’t understand Dyslexia and don’t understand that each dyslexic person has unique challenges, there isn’t a fix or and aid that is suitable for everyone. A lot of people see Dyslexia as an excuse and that your just lazy or cant be bothered. But believe me I’m not. I try so hard, I feel sometimes i work much harder than others but get the same results and that extra work is never praised. Unfortunately its a disability that people try to hide and find ways to avoid it.

Tiredness

Since 2013 i have felt extremely exhausted both physically and exhausted. I struggle to get a good nights sleep and also with all the symptoms like Panic attacks, anxiety, burping fits, sweating fits my body is working overtime to keep up. I have dark circles and bags under my eyes, which must make me look awful. I do try and push myself to keep awake and to get certain things done. But this runs me down and leaves me more exhausted. Taking naps during the day doesn’t really help, as still so much to do.

Again apologies if i Rambled, but hopefully, friends and family might understand a bit better, if they know how i feel and think inside. I’ve got to come to terms with all of these and just say “It’s OK to be Me”

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Tinnitus & Hearing loss…

Well new year and new problems, although hopefully on track to get it eased.

Been to see an ENT Specialist (Ear, nose and throat)  at the Royal Bolton Hospital. As i’ve had ringing in my ears since i hit my head back in 2013. Didn’t go well.

Having to have an MRI scan, as Doc things the bump to the head, might have shaken things up and the ear canals may have moved or been damaged, hoping not, but having the scan to rule it out.

They also did a hearing test and found i have moderate hearing loss in the left ear and severe hearing loss in the right ear. Normal hearing range is 0-20 decibels, I scored 35 in my left and 60 in the right ear. So will need a Hearing aid on my right side, which will be fitted in the coming weeks. Am not allowed to have a silent room, gotta have a radio/music/tv on in each room i go into, to help ease the Tinnitus and gotta have a special sound box to help with me falling to sleep.

Health Update

Health Update:

CBT: (Cognitive Behaviour Therapy)
Had my first (and last) session yesterday. They are unable to help at the moment due to physical issues and high pain levels. As part of the CBT process involves mobility and as I’m in pain it will apparently distract me. So have to get my knees sorted before they will work on my mental state. However surgeons won’t help till my mental state is better. Catch 22. Waited 12 months for this to be told no, had it happened earlier i might have gotten it done.

Physiotherapy:
Went to physio today. Very painful. Apparently I have issues with my hips to add to my knees and feet. They are weak and rotating my legs more than they should. Been given exercises to complete over the festive period and have to go back first week of January.

GP:
Doctors keeping my current meds the same but given me more pain killers. Takes my total of pills to 14 a day.lol

Advice, Assistance, Directions…

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I don’t know what to do for the best…

When i finished my last counselling session in 2014, i was starting to get back on track and finding my way again. The sessions helped with my PTSD. My flashbacks and nightmares were the biggest challenge at the time. Then in January 2015 i felt strong enough to get help for my next issues which was anxiety and my GP Referred me for CBT (Cognitive Behaviour Therapy). Which I agreed was right for me at the time. However i was expecting a 12 month waiting list. I’m now 9 months in and social anxiety is my biggest issue, however I’m not sure that CBT is now right for me in my current state of mind. I think talking to someone about my anxieties and things that had happened in my past (domestic abuse and past issues) that seem to be running rampant around me mind at the moment.

I’m scared of saying anything to my GP or asking for different help, cause i really don’t know what is for the best. I don’t want to end up in the same situation, if i cancel or change the CBT, i might then go back on a waiting list for another 12 months and that wont help. But at the same time, doing counselling/CBT when your not ready for it or in the right frame of mind, is also dangerous. (Numerous GP’s and mental health people have said this).

I feel i’m not only letting myself down, but letting friends and family down. Everyone wants me to get better ASAP, even though there is no official timescales for recovery. I don’t want to be a burden, a worry or a cause of stress for anyone.

There is always the crisis team, which i know have helped others before, but without a GP or someone referring me, i feel like a fraud asking for help. I just don’t know what to do or where to go!

 

Unsettled nights….

Since my breakdown in 2013, I had huge sleeping issues. Loads of nightmares and Flashbacks (PTSD) and really wasnt sleeping. I went for counselling in 2014 and we used an NLP approach (Neuro-linguistic programming), to try and get rid/reduce the unsettled nights. It worked the nightmares and flashbacks have ‘stopped’ and i’m no longing waking up in panic.

But it seems to have had a different side effects. I still appear to be having nightmares but the NLP approach stops me remembering them, which stops me waking up in panic. But lately I’ve been waking feeling very anxious and i’m not getting great sleep, lots of tossing and turning. Because i cant remember them, I don’t know what’s caused the anxiety so i can’t fight it or overcome it. Just have to put it down to nightmares and carry on.

Although the NLP approach has helped to stop the panic attacks and is allowing me to get some sleep, I don’t really know how to over come the current issues. Hopefully as treatment continues (on waiting list for Cognitive Behavioural Therapy), it will help address these issues. Positive thinking anyway.

 

 

Under going tests

Been quite quiet on here of late. Been going through a barrage of tests to find out why i keep collapsing and having dizzy spells. Thought it was my medication but after having them changed i’m still having issues.

Had a number of blood test which shows elevated levels in my liver so had more blood taken today.

Been quite stressful and anxious time, probably why my sleeping patterns have been thrown out again. So exhausted. Been having alot of mood swings and been very depressed but trying to cope.

Doesn’t help having money troubles either. Living on benefits isnt easy or nice.

 

My Nervous Breakdown

This is what has happened and why I’m now a nervous wreck.

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I’ve been unwell for couple of months were I haven’t been eating alot and been having stomach problems. I then found a lump on my bottom so went to see GP. Was sent to Hospital as Doctor has concerns it might be cancer esp after the history in my family.

They did a colonoscopy and found a further 2 small growths in my bowel, so had these removed and still awaiting test results (can be up to 3 months). During all this we were getting nuisance calls on the landline, which kept waking me up while I was trying to recover from the operation.

We made a complaint company in question, then started causing issues (This was on a Thursday 2 weeks after the colonoscopy). So we thought we’d go out for a nice evening on Friday I then got hit by a HGV while I was walking on the pavement. It was turning into Morrison’s loading bay and the trailer swung out and hit me. No serious injures just a bruised elbow.

At the same time I was getting hit by the HGV Mike was on the phone to his mum, who was saying she had collapsed and been on the floor for 2 days at her home. So was a lot happening all at once.

The Saturday and Sunday were very sore and uneasy times.

Due to my illness I have been sleeping a lot more and was woken up on the Monday 25th November 2013 by 3 Police Officers banging on the door to the flat. I was half asleep and very groggy from the medication I was on. They came into the flat and started asking about Mikes motorbike, where was it, did I have keys to it, did I ride it. Then they wanted to know where Mike was, So told them I thought he was at work and gave all the details of it. They then asked me for a photo of Mike. At that point I thought I was identifying a body. Not once did they say he was ok.

While I was dealing with one officer the other 2 were looking around the flat and going through my stuff. They then left me with a note to pass to mike so he could contact them. Still didn’t say he was ok, so now thinking his bike had been involved in a crash and he was lying injured somewhere. I kept trying to call mike but as he was at work he couldn’t answer the phone. After 4 or 5 hours I did get hold of him, and told him about the police so he then started trying to call the police from his work. So wasn’t until 10pm that I actually saw him and knew he was ok.

He still kept trying to contact them Monday night and was told several times, there is no record of anything against him or his bike and they couldn’t tell him why 3 police officers are looking for him.

On the Tuesday morning I was woken up again by the police at 10:30am banging on the door to the flat. Mike hadn’t left for work yet so was still here. The police arrested him on the spot for suspicion of Burglary.

They then started carrying out a full search of the flat, going through everything looking for evidence and they had told us they had already seen items that they wanted to seize. They didn’t have a warrant for the search but because the arrest took place in the property it allows them to search it apparently. They also provided no paperwork for anything siezed.

We were both in the living room and told to sit separately Mike in the armchair and me on the sofa. I then started having a massive panic attack during all this understandably. The police wouldn’t tell us anything, so we didn’t know what was happening or why he had been arrested. Mike has either been with me or at work, so really didn’t understand anything.

The Panic attack was one of the most serve I’ve had. I was visible shaking, sweating and struggling to breath. The police weren’t that concerned with me they were here for Mike and had got him.

They Then took Mike away and I thought I’d never see him again as I thought he’d be taken to the station, charged and be before a court in the morning and sent to prison. When they took him away they said they’d go to Bury Police Station and then decide where to take him. So I had no clue where he was. My mind was racing due to the panic attack and was thinking the most awful things were happening to Mike. A couple of hours after the police and Mike had left I was still struggling for breath so called the NHS helpline on 111 and they told be to go straight to the doctors, which I did, I was given medication (emergency Tranquilizers) to calm me down and then came back to the flat to be by the phone, so I could wait for news.

It wasn’t until around 10pm on Tuesday that Mike got back from the police station. He hadn’t been charged but had been put on police bail for 2 weeks while they continue there investigations. I was still in a state when Mike got home and I kept passing out and showing a lot of worrying symptoms. So Mike called an ambulance at around 1am Wednesday morning and I was rushed into hospital with a suspected allergic reaction to the Medication the doctor had given me on Tuesday afternoon. So we didn’t get back from the hospital until around 6am.

Due to all this I still didn’t know what was going on with the Police and Mike until later on Wednesday when we could compare the experiences. It was because his bike was seen in a car park near to where a burglary took place, they had mike on CCTV but didn’t go anywhere other than into the supermarket and then across the car park to the petrol station. But because the supermarket couldn’t find the CCTV from the petrol station, he was then arrested held for over 9 hours and then bailed for 2 weeks, as the Burglary had happened there.

After the 2 weeks and when we went to the police station to answer his bail. They said they had now found the CCTV and that there will be no further action against mike, ‘a case of wrong place wrong time’ as the police said – They still didn’t provide any paperwork though.

During the time Mike was in custody he kept asking the Police to check on me but they never did. The police didn’t follow a lot of the their own procedures and policies. We have lodged a formal complaint about how we where both treated and this is still ongoing and now causing issues itself.

Due to all of this I have had a complete nervous breakdown, I’m unable to stop shaking since the police came back in November, very jumpy, have panic attacks daily. Seen the doctor and on more medication with counseling being referred too. The police have now put both me and Mike on an ‘At risk Register’ for vulnerable adults. Still taking it day by day so far I’m scared to be in the flat, scared to go out. even scared of the phone and internet.

I’ve tried arranging a visit to the local police station to go through my concerns and ‘nightmares’ so i can see the police arn’t as bad as i fear or imagine and that they are there to help and reassure people, but to date they have not agreed and keep fobbing me off.

The Above was Written on 12th January 2014  [whohit]My-Nervous-Breakdown[/whohit]