Saturday, 28 June 2014

Feeling emotional, skin rashes and more

They say that it's good to cry and let the emotions out, but sometimes it isn't - like, when it hurts. I don't mean emotionally, but physically. Basically, my skin rashes are back, including dry flaky skin on my face, and red patches on my neck, arms, legs, and various other areas. I have a specific type of dermatitis, which was diagnosed, but I can never remember the name. I don't want to talk too much about this now. I might expand in another post. I need to learn to focus on what I am trying to express, and not go off at a tangent. I am always rambling, and I know that I must become boring. Anyway, it physically hurt and stung my eyes and I couldn't open them at all for a couple of minutes. It was horrible. That's because I've got so much dry skin around my eye areas and crying really aggravated it. I know that it sounds ridiculous, but it was stressful.

I do know that I should really get the skin rashes checked out further, as in full allergy testing - but the fact is that, when I saw the dermatologist, nearly a year ago now, she actually said, and I agreed, that it was unrealistic, and would be counterproductive, to try to get me into the hospital three times in one week, when I have agoraphobia and IBS and various other issues, which would make this extremely stressful - and to be honest, in practical terms, highly unlikely. The appointments would need to be on specific days at specific times and, if I missed even one, it render the results invalid and useless. I don't know how these things work precisely, but that is how I understand it.

Anyway, so much for getting my hair dyed this month, even if I could overcome the other obstacles, and there are many. The hairdressers simply cannot do the dyeing procedure if the rash around my neck area flares up badly, as it has done. I know that this sounds like a small thing, but it isn't to me, as I don't feel confident without having my hair dyed, and I am also starting to have problems due to the fact that my hair has become resistant to the dyes. It took something like two and a half hours for them to dye it and redo the process last time, and the end result was good enough, but I cannot possibly go through such a long procedure each time. I am concerned that, if I push the point about breaking it up into two sessions, we are going to get into the fact that I am requiring an extra appointment. I am on a very limited income and I hope that I won't have to pay double the usual amount, even if I do have to pay something extra. It may happen that they will have to charge me extra in any case, whether or not it is done in a single session. They didn't say this, but I have to be realistic, and it does involve extra time and work for the stylists, so I can't and don't resent it - simply wonder how I am going to afford it. Part of the reason why I particularly wanted to go to the hairdressers after only one month this time, instead of two or more, was because I hoped that it might make the difference and mean that they could dye it successfully on the first attempt, without having to redo the entire process. By the way, there are many reasons why I cannot do the procedure myself at home, as people always mention this, and have often been critical and hurtful with their comments, implying that I should not be going to the hairdressers, as I am currently on benefits. I actually have very few luxuries these days. My over-spending and drinking days were behind me long ago. I don't have my hair cut each time unless I haven't managed to get there for two months or longer, and it is still quite expensive, but I don't, for example, go out socialising, and haven't been on holiday since 2008. I don't feel that I should have to justify this, but maybe it is good for me to explain, as it helps me, if nothing else.

One more point about my skin rashes: I have dermatitis on my hands and part of my arm that is caused by over-washing them. I do this because I have OCD. This is not the same as the rashes which occur elsewhere on my body. 

I do have creams which I can use on my various rashes, and have often found that anti-histamines also help.

Thank you for taking the time to read this post. Love and blessing to all of you.

Tuesday, 24 June 2014

My version of maladaptive daydreaming

I don't seem to fit in again.  Story of my life?  Further to my last post, on the subject of maladaptive daydreaming - it seems that people are describing fantasy worlds in which they have a whole new identity, maybe have magical powers, and so on.  One girl mentioned hanging around with cartoon characters.  That's not what I meant really.  I actually have fantasies which involve real people.  In a way, that is worse.  They can be very elaborate.  I have invented children for myself in some of them.  I don't have a different name in my daydreams, but I guess that I am more of an idealised version of myself.  I do lose a lot of time on being "in a world of my own", though.  I know that. 

Anyway, I don't know if I have found much that I relate to, after all.  It's disappointing.  Maybe I really am the only one who is like this.  I doubt it actually, but I don't think that the "maladaptive daydreaming" label, as it stands, seems to cover it. 

Maladaptive daydreaming

I have just discovered the term "maladaptive daydreaming", and I feel overwhelmed. I cannot believe that I have never heard of it before, as this is something to which I totally relate. I first heard the term in relation to Dissociative Identity Disorder, which I don't have, although I do experience dissociation, and many aspects of DID overlap with my own mental health issues. I have now done a search on Google, and there are people discussing "Maladaptive Daydreaming Disorder" or "MDD", although it appears that this is probably not yet an official diagnostic category.

I have been trying to piece together my own jigsaw, due to the lack of interest and support from the mental health team, none of whom will even seriously discuss my depression with me, since changing my "primary diagnosis" to OCD. I know that they often resent my attempts to investigate my own mental health, and to learn about mental health disorders in general, but I only want some answers, and to find out what is going on with myself. I am also interested in finding out about different mental illnesses, so that I am in a better position to help and understand others. I am so fed-up with hearing that people shouldn't "self-diagnose", with either physical or mental health problems. I wouldn't even be diagnosed with dyspraxia had I not first "self-diagnosed", later having the diagnosis confirmed by professionals. Self-diagnosis can be dangerous, but so can just "going along with" what you know to be an inaccurate or incomplete diagnosis.

Anyway, I am going to research "maladaptive daydreaming" some more. I don't feel ready to explain it yet, as I am only just discovering about it myself, although believe me, it is nothing new that I am hearing about. The only aspect that has come as a shock to me is that there is actually a name for something which I have experienced since childhood.

Wednesday, 18 June 2014

IBS and Imodium addiction

So far on this blog, I seem to have concentrated mainly on mental health issues. I have much more to say on the subject of mental health, but today's post is going to be about one of the physical health problems from which I have suffered for several years now: IBS, or Irritable Bowel Syndrome.

I don't think that I particularly need to explain what IBS means as such. Most people have a general idea and, in any case, the information is readily available, online and in books.

It is hard to explain to people how disabling IBS can become, especially as many people with mild IBS do "get on with it" and manage to lead full lives, but for me, and many others, it becomes very restrictive.  It drastically affects my ability to get out, and to stay out for long when I do. I also suffer from other problems, including dyspraxia, agoraphobia, social phobia, reactive OCD, and depression, which combine to make it that much more difficult to get out, and to cope once I am out, and it is impossible to put each different illness into a box and treat it entirely separately, without reference to the others. However, often for me, at the moment, the deciding factor in whether or not I can get out will be the IBS.

As I have PCOS and endometriosis, and these conditions also make my periods worse - and the pills that I use to help with my heavy periods have the unfortunate side-effect of making my IBS symptoms that much worse - I rarely leave my flat at all during my period. Until recent years, I did go out during my period, but I have become more disabled by this now. My periods are even heavier than before and I have developed the endometriosis, which I did not suffer from before.

I currently take peppermint oil capsules before meals and approximately four or five Imodium tablets per day. Taking so much Imodium does have some negative side-effects, but I could not get through without it. The doctors, although they prescribe the medication and got me into using it initially, want me to reduce the dosage, with a view to coming off the tablet altogether, and are unsympathetic about how difficult this is for me. They reduced my prescription to three tablets per day on the week that I moved, just over a year ago now, and moving is so stressful anyway, as most people realise. Since then, the issue has not really been resolved. I was buying my own tablets to "top up" those prescribed, but it is becoming harder to get hold of Imodium from the stores to which I can physically get. My husband and remote carer has had to buy them for me on many occasions, which causes a great deal of conflict and stress. I do want to reduce my Imodium intake, as I don't even like being on medications in general, having had so many bad experiences with prescription drugs. However, I feel that I need to do this at my own pace, so that it doesn't set me back further, and potentially make me entirely housebound.

Thank you for taking the time to read this post and, if you do suffer from IBS, I wish you well. You are not alone.

Tuesday, 17 June 2014


I am aware that self-injury is a difficult subject. It is controversial and widely misunderstood - and for many of us, addressing the issue can be emotional and deeply painful. I am also conscious that my last post was about depression. This blog was, and is, not intended to be exclusively about mental health. It is a blog about chronic illness, both physical and mental. However, the issues that are on my mind at a particular time will tend to be reflected in what I feel the need to write about, and this seems unavoidable. I have been thinking a lot about self-injury, and in a way, I need to write this post, in order hopefully to move on.

I shall start with the term "self-injury". Perhaps the more commonly used term would be "self-harm", and I must admit that this is the one that I have generally used myself. However, I am using self-injury here, as it is more specific. Self-harm is a broad term, which covers addictions, eating disorders, and so on, as well as self-injury. Self-injury usually refers to "cutting", although people self-injure in many different ways. I will only use the term "self-harm", for the purposes of this post, when I feel that self-harm, in the wider sense, is applicable to what I am saying. I hope that this is not too confusing.

Self-injury is not the same as attempted suicide, and this needs to be made clear. Many people who self-injure do have suicidal thoughts and feelings, and people who self-injure may also, at some point, attempt or seriously contemplate suicide, but self-injury in iself is not attempted suicide. It is a coping mechanism, although not a healthy one. It is a way in which people survive and deal with emotional pain, which they could not otherwise endure. It is particularly important that self-injury is not confused with attempted suicide, as this also leads to genuine suicide attempts being dismissed as "self-harm" or "self-injury".

As to whether self-injury is for attention - occasionally, yes - but usually not, and often people will be desperate to hide self-injury scars. People's motives and personal issues vary, but in my experience, most people who self-injure are not attention seeking.

People who self-harm are likely to suffer from depression or/and anxiety, but most people with depression or/and anxiety disorders do not self-harm. There is a much stronger specific associaton between self-harm and, for example, BPD (Borderline Personality Disorder) and DID (Dissociative Identity Disorder), both of which usually result from trauma, particulary in childhood.

It is a misconception that self-injury is either an exclusively "teenage issue", or an exclusively "female issue". It affects people of all ages, and males as well as females. This needs to be recognised so that more people feel able to openly discuss their problems and experiences.

I have not mentioned much about my own experiences here. I have "cut" in the past, but I don't currently, and I have never had a serious problem with cutting, compared to many others. I have mainly used another method of self-injury, with less severe, long-term consequences. I still use this method of self-injury at present. I am trying to reduce how frequently I do this. I wanted to discuss this subject, not only because of my own experiences, but because it concerns me in general, and because I do know others who self-injure.

I find it draining to write these blog posts but, if one person out there feels less alone as a result of reading my words, then it will have been worth the effort. I have felt so alone, with so many struggles throughout my life. Nobody deserves to feel that way.

Thursday, 12 June 2014

Chronic moderate to severe depression

I would like to discuss some questions and feelings that I have about depression - in general and also relating to my own experience of depression.

First of all, I would like to clarify that I have always suffered from depression - for as long as I can remember. I remember having these feelings as a small child of two or three years old. Often when I tell people this, they simply refuse to believe me. The next question is always whether or not it was diagnosed. No, I was not diagnosed with depression at two years old, but I know that I have always had the feelings of depression. When I was around eight years old, my mother told me that I mustn't pull the bed covers right over me, as I could suffocate and die. I had apparently done this unknowingly. After this, I deliberately tried to do the same, but it didn't work, because she always checked on me at night. I don't know if it could really have worked anyway, but it has always stayed in my memory, as this shows how young I was when I actually started to have suicidal thoughts and feelings.

In the process of researching the subject of this blog post online, I have come across more information, which is of interest, and may to some degree, be the answer to some of my questions. My concern has been that most information given about depression, in books and online, describes two specific types of depression: major depressive episodes, and dysthymia, with the latter term basically referring to chronic mild depression. To me, this simply fails to address the fact that depression can often be both chronic and moderate or severe. Even the fact that "double depression" is occasionally acknowledged - episodes of major depression, occurring in those already suffering from chronic depressive disorders - doesn't entirely cover what I am talking about, although it is a start, and I certainly wish that double depression was more frequently mentioned. However, I have to say that I have now come across the term "persistent depressive disorder", which does seem to make more allowances for longer-term cases of major depression. This term apparently came into use in May 2013, although this appears to be in the USA. I don't know if this term is current here in the UK and elsewhere, although I am hoping that it is.

I have to say that I don't find that the distinction between mild, moderate and severe depression is always appropriate. If you suffer from mood swings as I do, it is actually possible to make the transition rapidly from mild depression, which could easily be missed altogether, and which can often be "covered up", to being literally suicidal. Dramatic mood swings are a well-known feature of bipolar disorder, but they also occur in unipolar depression, particularly when someone has Borderline Personality Disorder, or BPD features. My own mood swings would be between my "normal" (for me) state, and severely depressed or/and angry or/and agitated or/and panicky. They occur more frequently just before, during, or just after my period, but happen enough at other times to mean that they can't be attributed entirely to my menstrual cycle. Sometimes, the mood changes are very sudden. Since I do not get "highs", I do not consider that my mood swings relate to bipolar disorder, although it is true that the distinction between unipolar depression and bipolar disorder is not always as clear as is often imagined, especially when considering forms of bipolar such as cyclothymia. By the way, with regard to BPD - I am not currently diagnosed with this, but I am trying to get my diagnosis reviewed. However, that subject would require a blog post of its own, which I may consider writing in the future.

I do get frustrated, to say the least, by talk of "serious mental illness", which somehow excludes depression. Severe depression can actually be classed as a serious mental illness, and it is a misconception that it is not. Also, I think that there should be more recognition for the specific struggles of people suffering from both depression and anxiety. It is not easy to live with either depression or anxiety, but to suffer from both can be much more disabling than people often realise. I will talk more about anxiety disorders in a future post, and possibly cover the specific difficulties that many of us have when we deal with both anxiety and depression.

Thank you for reading. I do have several ideas for possible future posts, so watch this space. If you are struggling with depression, know that you are not alone, and there is always hope.

Monday, 9 June 2014

Getting out and about

I had been hoping to write a post on why I find it so difficult to get out and about, which is due to various factors, involving long-term physical and mental health problems. I actually attempted to put these into some sort of logical order in my mind, by creating a mind map.

However, I begin to wonder how personal I want my explanations to be. I do have a tendency to be very open, which is generally positive, but I sometimes feel that I can be a little too open. This can leave me feeling vulnerable and exposed. Also, it does offend people on occasions, and although I can't, and won't, let this stop me from being who I am, I really don't like to feel that I have upset people, and I do fear losing friends. As well as these considerations, I don't particularly want to write blog posts that sound more like answers on a DLA form, or whatever they call those forms nowadays. (I can't always keep up with the constantly changing terminology, I'm afraid.)

Anyway, I may or may not write the blog post that I originally planned to write, but for now, I would just like to mention that, although I do struggle to get out, I am trying to overcome this, with some success. I don't get out every day, but my ideal would be to do so, and I get out as many days as I can, although usually only for a short local walk. I have recently managed to get the the hairdressers on one occasion, and to a local furniture store and cafe on another. These were significant achievements for me.

I did go for a short local walk this afternoon, but to be honest, I haven't achieved much else today. This is largely because I have felt depressed and withdrawn. Writing this blog post now means that I at least have something to show for the day.

Love and blessings to all of you, and I hope that I will have more productive days to tell you about in the near future.

Monday, 2 June 2014


So, why a new blog? As many of you will know, I have started up quite a few blogs, in the past. Of these, my poetry blog has been the most consistently active. In terms of prose blogs, I have always struggled to keep up with them, after the initial enthusiasm, for various reasons. I do tend to need a change of focus from time to time, which is legitimate, although I must admit that I am also prone to losing interest, and randomly abandoning projects. So, exactly how many groups did I start up on Flickr, in the days when that website was what online basically meant to me...? That is, before Beliefnet took over as my latest online obsession - followed by various Ning networks, and then, of course - it had to happen - Facebook...! In fact, I have learnt somewhat from past experiences, and I set up just the one group on Beliefnet; resisted the urge to set up my own entire social network on Ning, in the days when it was free, and believe me, it was tempting; and as for Facebook, I might have joined a lot of groups and fan pages, but in terms of setting up my own - I have only ever set up one page (apart, of course, from my profile page), for sharing my poetry. I try to ensure that anything that I do set up, is something that I could abandon at any moment, without feeling that I had let anyone down. This does take the pressure off, as I don't work well when I feel under pressure, whether that be external or internal pressure.

Anyway, the main intended focus of this new blog is going to be living with chronic physical and mental illness. I will discuss some of the specific issues that I struggle with in my own life, and this blog will hopefully also provide information and inspiration for others. If nothing else, I want people out there who do suffer with chronic health problems to know that they are not alone. I also feel that it is important to spread awareness, and blogs are one of the many ways in which this can be achieved.

Another personal reason for setting up a blog is that I find myself talking more and more to different friends, at different times, about health related issues, and I really want to have a "central place" for my rambling. Sometimes I feel, rightly or wrongly, that I should make an effort not to moan so much to friends, and those around me, but I don't feel that "keeping it inside" is helpful, so in a way, a blog can be like a constant best friend, who is there whenever I want to talk, in a way that no actual person could ever be. That might sound a little negative, but it isn't really, as my friends do have the option of reading my blog posts, as and when - and of course, it won't entirely "shut me up"...!

Thank you for taking the time to read my first post, and hopefully, there will be more.