Tag Archives: Family

Understanding – At last

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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.

On-wards and upwards

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Taking a break works wonders. The start of September was particularly difficult, I was very depression and struggling with a number of things. I had also restarted counselling with Bury Healthy Minds.

Took a weeks break and headed to London to visit family and this coincided with a number of Transport events and open days. We had a Trip on London’s Mail Rail, Visited Brooklands Museum and the London Bus Museum, this was followed by visiting the London Transports Acton Depot Open day. And the week was rounded off with a spectacular look behind the scenes of London’s Charring Cross Tube station with Hidden London.

Concorde at Brooklands Museum:

London Bus Museum:

Acton Depot Open Day:

Charring Cross, Hidden London:

Saw almost every type of transport imaginal. Am a huge bus and train enthusiast and these really were very special moments that really did make my year! Could have spent hours or days exploring these places more. So much to see. Had a very positive impact and really need cheer me up and get me out of my depressive episode I was in before.

Am now back in Manchester and working with counselling to hopefully improve things. We’ve had 3 sessions so far and have delved right into thoughts, my past and my beliefs. Its quite amazing how intertwined everything is and even my counsellor is realising that focusing on one particular thing wont work or really help. So i’m doing numerous Mood Dairy’s to record what i’m thinking and feeling during the times between the sessions to see if anything stands out. Feeling very positive so far and think my current counsellor is actually starting to understand what life is like for me. On-wards and upwards…

Running on Empty

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Feeling both physically and mentally drained. Its been a while since my last post, but this past month has been exhausting. I feel I’m just going through the motions.

I have completed my one on one counseling sessions with Bury Healthy Minds and am now on a waiting list for group anxiety therapy. Their will be 8 to 10 people in the group. Hopefully I will be able to cope with it and come out stronger than when I went in. During my one on one sessions with my counsellor she recommended that I had a blood test done by my GP and that I get referred for an Austism test ( GP agreed and just awaiting appointment). The results from the blood test came back and showed high levels of enzymes in the liver, so GP has referred me for an Ultrasound at the hospital.

Having an anxiety condition and suffering from depression I have difficulty waiting on things. Waiting on referrals or test results, gives time for my mind to race through the what ifs? Hopefully one day people won’t have to wait.

My counsellor, family and friends have all wanted me to reapply for PIP (Personal Independence Payment). I had been holding off on this as its so complicated and delves deep into thoughts and physical issues. I had already received and completed a medical questionnaire back in December for the DWP (department of works and pensions) and said I might be called for a health assessment. So wanted to get this out the way first. After 3 months I hadn’t heard anything so applied for the PIP.

My worst nightmare came true when I received both the PIP form and a letter asking for me to attend the health assessment, arrived on the same day. I’m so scared, its my illnesses and me being judged and vetted. I understand the need for them, but wish their where less intrusive ways, and better questions than “So why haven’t you killed yourself yet?” Being asked. I know in my mind its a standard question and why they ask it, but makes me feel insignificant, unwanted and makes me feel a burden and wasting peoples time.

I didn’t choose to have physical illnesses and didn’t choose to have mental illnesses but they way I have been treated wether intentionally or not, makes it feel like its my fault. Which then makes the depression deepen and the anxiety worse. I’m sure I’m not the only one to feel like this but really is a poor way of handling things.

My GP has changed and increased my pain medication, is a lot better than the last one but doesn’t completely rid me of pain. As anyone who’s been in pain for a long time can understand it too leaves you feeling exhausted.

I really did think I was getting better at the start of the year but the past 2 months have shown me that although there might have been some improvement there is a long and hard road to recovery to go. That is indeed if I can recover. I know I won’t ever be the same again, but hopefully I will be able to wake up in the morning with enthusiasm and have a pain free day followed by restful nights sleep eventually.

Anxiety is Building Up

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Anxiety is building up and can feel i’m struggling / fighting off a panic attack. I’ve had a lovely few days with my parents who came to visit and i’m quite proud of myself i pushed myself a lot and survived big crowds and lots of decision making. Even though it was family i am very socially tired. Its kind of hard to explain, but when you’ve been active and been in a high anxious state for a while, you need a number of days to relax and chill out to get your anxiety and stress levels down. Something that i think has definitely improved compared to a couple of years ago, but does leave you feeling both mentally and physically drained.

I’m very worried/scared/anxious about getting the new Hearing aids. Have had a hearing aid for my right ear for just over a year now. And now I will be getting one for the left ear as well. After getting my first hearing aid, i realized how much i had been missing and felt so guilty and angry at myself for not realizing it earlier. I don’t know If having 2 hearing aids will make the alot of difference or not to what i can hear, hopefully will, but nervous about it all the same. Then there’s the interaction with the hearing aids and the TV, Telephone and mobile phone. Will i then need adaptations to use these? (TV Loop System, Special hearing aid compatible phones). Its a lot of unknowns and i know there’s nothing i can do about it until i get the hearing aids fitted, but i’m still panicking over it anyway. There’s a part of me that’s exciting about it, i know how much a difference my first hearing made.

Then as we go into April, benefits are reviewed and changed. Monthly payments for bills (Gas, Elec, Water) Have been changed as well. I wont know whats happening or whats going out and what if anything i’ll be left with after. I hate talking money and fiances and really dislike change. Again I know there’s nothing i can do right here and now, but i’m panicking about it.

I So which there was a simple switch to turn off my emotions, I really do hate feeling this way and still feel so very guilty that I’m mentally unwell. I always expect the worst, that way its a surprise if things are better than imagined, (Will need to talk about this to my counselor and see if we can do anything to work on it, it might come down to confidence issues again).

I Have looked into a number of disability pages and grants and to be honest its all very confusing and don’t really know where to start. Most of them you need an assessment or need to contact the charity/company directly, but when your scared of everything and really don’t like meeting people or talking on the telephone it leaves you a bit lost.

No more fight left

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I feel so guilty. Guilty that I cannot fight and beat this depression, anxiety and PTSD. Guilty of the effects it’s having not only on me but on friends and family. I feel guilty asking for help, others get along by themselves, so why can’t I bounce back. Why is life so difficult? I feel guilty for saying how I really feel and worry about the effects it’ll have on others.

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I hate having money troubles, struggling to get by just to buy food and pay the bills. I wish I could be back at work earning money, rather than surviving on handouts. Have stripped back as much as I can. Can’t go out as unable to afford things. Can’t see family as much I’d like due to costs of train fares. The money worries keep me awake at night and increase my anxiety ten fold.

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Here’s hoping for a cure  and an end to mental health sufferers globally. It happens so quick you fall apart completely and yet takes years if ever to become ‘normal’ again. I’ll never get back to who I was before my breakdown, that has been taken from me. Trust that can no longer be restored. Have found I’m more cynical of everything, as before I used to see the good in everything and everyone. I just get that sinking feeling, another battle, another fight. I’ve been so strong and fighting so hard, I feel there’s no more fight left in me.

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The Internet is a lifeline….

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The Internet is a lifeline for people who suffer from Mental Health Issues. You can have loads of support from friends and family, but if you’re terrified of social situations it can be very difficult to meet for a coffee or even talk on the phone. People do take it for granted that its easy to walk down to the shops, do your shopping and head back. but when you Suffer from PTSD and scared of the Police (GMP – Greater Manchester Police), like I am. Every time you go out. Its takes hours of planning and building yourself up, not just mentally but physically as well. When i’m having an Anxiety attack, then i’m sweating and shaking profusely and takes a while before i can calm down and build the confidence to head out.

On Days where anxiety is too high or confidence is too low (or both), The internet is a lifeline. It allows you to connect not just to friends, family but online friends and sometimes more importantly other sufferers who are going through what you are. Knowing that its not just you and that other people know exactly how you feel and what your going through, not only helps boost your confidence but you share coping strategies.

I suffer from not only Depression, but Anxiety, Panic attacks and PTSD, as well as some other medical issues. During the course of the day with so much affecting me, my moods can be all over the place. So having access to the internet and my own network of coping strategies (My Blog, Member of several groups, Facebook, Twitter, email etc..) it is an outlet and a release. From one minute to another my mood can change.

I have found that do tend to bottle feelings, emotions and thoughts up inside, and have found it does not help or work and gets ya into a bigger mess and more of a state. However I do find sharing my thoughts and feelings online can be a huge release. It might be difficult and worrying for people to read, but its much better that i’m talking about these feelings and sharing rather than cutting myself off and letting the thoughts fester.  [whohit]Internet-is-a-lifeline[/whohit]

 

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