Category Archives: neutropenia

10 tips to keep your sanity when you have chronic health problems

Standard

Living with chronic health problems and long-term illness can push you to your limits physically, which in turn, can send you over the edge mentally. Having lived with Neutropenia and M.E (Chronic Fatigue Syndrome) for many years now, I can verify that these illnesses have threatened to crack my sanity and spirit like a boiled egg shell hit repeatedly with a spoon.

In order to get through the rest of my life with some semblance of my mental health intact, I’ve developed several ways of coping and getting by that I’d like to share with you today.

1) There’s a lot of advice floating around about ‘accepting’ your situation and coming to terms with it and that’s all very well and good if you can do it. After 17 years of illness however, I am no closer to accepting it than I was at the beginning. I’ve now decided to accept that I can’t accept it and deal with that instead. I believe it’s healthier to feel all your feelings, even if the so-called negative ones such as anger, frustration, bitterness, envy, loss or regret. What I’ve discovered is that these feelings are fluid anyway and it’s impossible to stay feeling any one thing forever. If I allow the feelings to come without saying ‘I should have accepted this by now!’ they usually pass of their own accord and then I can get on with making the best of things.

2) Work out what your physical and mental limits in life are and stick to them. This is a lot more difficult than it sounds, but I’ve learned the hard way that ‘pushing myself’ is no longer an option. I’m done with payback and exhaustion from not listening to my mind and body.

3) In order to achieve 2) do not listen or pay attention to anyone who thinks you should be doing more. This is also a lot more difficult than it sounds but unless someone has the exact same conditions as you which affect them in the exact same ways, they have no place advising you on anything.

3) Forget about rigid time-management and organising your life. I tried this for years after I first got sick thinking it would help me maximise the time when I was well. What happened was that I had to change my plans and alter deadlines so much due to the unpredictable nature of my illness that I ended up feeling like a failure who couldn’t get things done. As difficult as it sounds, ‘going with the flow’ is a better mental approach for me than putting expectations on myself that I can’t live up to.

4) Prioritise instead and then you will be able to live with the lack of order in your life. My priorities are my health/self-care, work, partner, friends and family ( all at the top together ) Sadly, my goals and ambitions have to be lower priority because it’s just common sense that I can’t do everything at the pace I want to. Hence the sporadic blog posts, the years it took me to start getting my writing published and the YouTube channel that I’m desperate to develop, but which is moving along at a snail’s pace. Everything else like housework, decorating, crafts, reading etc is lumped together at the bottom of my priorities because if I kept up with them at the level I would like, the top priorities would suffer. Travel is nowhere on my list of priorities, even though if I was well I’d love to travel more. It takes so much energy that it is permanently on a back burner. Even going away for a few days results in payback and massive exhaustion. Trying to do everything will definitely send you insane.

5) If anyone has the audacity to say to your face they don’t believe your illness exists or that you aren’t really that sick, there are two simple steps you can follow. One is to talk to them and try to educate them about your illness and if this doesn’t work, you can go straight  to step two which is to remove them from your life via the nearest available exit. If that’s too brutal for you, try a gradual ‘phasing out’ so that you see and talk to them a lot less. These people are called ‘naysayers’ and they are one of the biggest threats to your sanity

6) Indulge yourself often. Living with health problems is 20 times more difficult than living a normal life, so regular treats are essential to stop insanity showing up on your radar. For me it’s clothes and I don’t care if I have too many or don’t need any more. I work very hard to keep my job whilst feeling awful and so if I spot a new leopard print item, I’m having it.

7) NEVER compare yourself to anyone else who is well. Comparing yourself to someone who is well is futile and also a bit silly. You might as well open the door to insanity and offer it a cup of tea.

8) Don’t feel you have to put on a brave face worse still, be ‘inspirational’. All of this can take energy and make you more ill from the effort.

9) But don’t moan a lot either, because this can also be very draining, for you and everyone else.

10) ‘Big up’ yourself and remember to congratulate yourself regularly on the achievement of surviving health issues. Not going insane takes considerable effort which can’t be underestimated. I said ‘well done’ to myself nine times yesterday!

Advertisements

10 things you didn’t know about living with a rare disease

Standard
10 things you didn’t know about living with a rare disease

1) For Rare Disease Day 2015 I wanted to tell you about my rare disease which is called Cyclical Neutropenia. This is a disorder of the immune system which affects the white blood cells (neutrophils) and I’ve had it for 17 years, since the age of 26. I don’t make enough neutrophils to fight bacterial infections and without treatment, a relatively minor infection such as a sore throat could become fatal within 48 hours. Doctors have not been able to explain why I got it. I will have to live with the condition for the rest of my life.

2) The condition affects one in a million people worldwide.

3) I have to take an injection called GCSF every week which boosts my neutrophil count but causes unbearable side effects. Ironically, I find the treatment and the discipline of having to take it to be the worst part of the illness. Once I’ve injected, I’m very ill for two days so I can only have it at the weekends otherwise it would interfere with work. However, the consequences of not taking it are unthinkable. Before GCSF, people with Neutropenia had very little quality of life, were frequently hospitalised with major infections and often died.

4) The fact that this illness is invisible as well as rare is also very difficult to cope with. No-one has ever heard of it and that includes doctors. Nobody knows how to help me and that includes doctors. All the developments in managing my illness have been on the back of my own research and efforts. It might surprise you to know that I would gladly swap it for a worse, more high profile illness to get better support, treatment, awareness and understanding. I would also prefer to look more sick than I do and for the illness to manifest itself in some sort of obvious physical disability. Neutropenia has wrecked devastation on my life, but all I hear is that I’m ‘looking well’.

5) My life is a strange and inconsistent mix of living and being sick. I’m not completely in control of when I can work, see friends and family, clean my house and chip away at my writing goals. I’ve had to accept reducing my hours at work, earning less money, never having the house the way I want it and hoping people won’t mind if I cancel meeting them or cancel attending an important event yet again. Having said that, the times when I feel well are lived to the full. I love and appreciate every single little thing I’m able to do because tomorrow I might be sick or have to take GCSF.

6) I’m eternally grateful for internet support groups, particularly the UK Neutropenia Facebook group. I did the first few years of my illness without any groups like this and it was hard going. Neutropenia is a lonely illness. It’s amazing that now I can just go online and chat with people about what I’m going through. I’m also thankful to the group’s founders for their tireless efforts to raise awareness of the condition.

7) One thing I definitely didn’t realise when I first got diagnosed is that I’d still have to deal with all the other difficulties of life as well as Neutropenia. There are no concessions when it comes to break-ups, bills, work stress or death. You still have to deal with them even if you’re sick. I’ve learned now that if something major is happening then everything else has to take a back seat. I get through most things with a mix of painkillers, caffeine, adrenaline and willpower. I also pray every night that life won’t throw any new negative life events at me and ask that if it does, I will find the resources to get through it.

8) Having Neutropenia has sent me to the edge of despair but it has also taught me patience, determination and tenacity. Despite the overwhelmingly negative influence it has on my life, it hasn’t stopped me doing what I want. I’ve had to adjust my expectations of how and when I can do things but as long as I don’t set goals that are too unrealistic, I can make progress.

9) Having Neutropenia has also taught me to look after myself emotionally, mentally and physically. I wasn’t very good at this before. It’s taught me to take responsibility for my diet, lifestyle and wellbeing because the consequences of not doing so can make my illness a lot worse. I’ve realised I can’t be everything to everyone anymore. Anyone who brings negativity into my life can now see themselves out via the back door. Now my life is full of good food, lots of rest and people I love to spend time with when my health allows.

10) There is a 50% chance that if I had children they would have Cyclial Neutropenia. There are many reasons why I’ve chosen not to have kids and this is high up among the reasons. I’ve struggled so much with this illness that I couldn’t inflict it on a child. Even if they were healthy, I don’t want to be a sick Mum. I could only entertain the idea of being a parent if I was able to do it to the best of my ability. I know other people with Neutropenia who have kids but it’s not the right thing for me. I’m happy with my decision but if I didn’t have this illness, there is a good chance that things could have been different.

To find out more about Rare Disease Day 2015 and hear other people’s stories of living with rare illness, head over to http://www.rarediseaseday.org

How do you know when to come off anti-depressants?

Standard

Medication can play a vital role in managing mental health issues. I’ve been on an anti-depressant called Dosulepin since December 2009 and at the end of last year, felt stable enough to try to come off it.

However, my GP told me that Dosulepin is one of the hardest anti-depressants to come off. It’s an older, tricyclic version and there aren’t many people still on it. Which begs the question, ‘Why was I put on it in the first place?’ I don’t suppose I’ll ever know; I was at a different practice in 2009 and was in no fit state to question the doctor at the time.

At Christmas I was taking 150mg a day and my GP advised a very slow and gradual reduction by 25mg to start with. Imagine my surprise when I felt like a complete mental raving lunatic within a week. It was so unbearable that I immediately went back up to 150mg.

A few months passed and I decided to have another go at reducing the dose. I dropped by 25mg again and the exact same thing happened. I decided to try and withstand the withdrawal effects and mustered up all my strength and determination. I had two weeks of intense mood swings, feeling unsettled and bad nightmares, but sweated it out as I can be very stubborn and didn’t want to be beaten by a tablet. It was hard to separate the feelings from my sense of ‘myself’ but tried to see it as a purely biochemical response; a change in brain chemistry that was bound to make me unsettled. It didn’t mean I had lost control or slipped back into depression. Things stabilised at the end of the second week and it seemed like my body had become used to the change so I dropped my dose by another 25mg. This immediately made me feel I had been thrown into turmoil again and I noticed that my anxiety, which had never been far away, had now reared its head again with a vengeance.

It’s been two months since the last reduction and although my GP is keen for me to keep dropping the dose, I now don’t feel confident enough to attempt this.
I realised there were a lot of psychological issues coming up that I was confused about. For one, I can’t remember what I was really like before the anti-depressants. I don’t know what I will be getting back to and I don’t know what my ‘normal’ was. I’m not sure if I’m permanently changed now from life experiences and simply being older and I don’t know how I will know when I am ok enough not to need the tablets.

I do remember that I always felt things intensely, always felt anxious  and always struggled with low moods, even without the bereavement that pushed me over the edge and onto anti-depressants.

During the last two months of being on 100mg, I’ve definitely felt different and not in a good way. I’ve settled into feeling generally low and noticing that I’m struggling a lot with my Neutropenia and M.E. My health problems have always been difficult to cope with, but I have a new sense that I’m at the end of my tether with them and can’t take it any more. They are lifelong conditions though, so I need to find a way around this! But do I need to have come off the tablets completely and had a ‘settling in’ to the new brain chemistry period to really know how I am going to deal with things?

The way I’m feeling right now is that I’m having to constantly draw on everything I’ve learned from counselling and CBT in the last five years to keep a grip on my mood. My anxiety can be all-consuming and whether it’s a biochemical withdrawal reaction or not, it is difficult to cope with. It’s knocking my confidence and it’s demoralising that this is how I am without a third of my tablets. After two months, I’m obviously through the turbulent upheaval of the last reduction and this is what I’ve been left with. I’m thinking maybe I’m just one of those people who needs medication and I should not try to reduce the dose further. I don’t have a problem with that, but Dosulepin has some pretty nasty side-effects if you take it long term and if I’m going to be on tablets, I don’t think these are the best choice.

I’m intrigued to know what’s on the other side though and to see if I could cope without them. I’ll never know if I don’t try. I don’t want lack of confidence to stop me trying, but I also don’t want to take risks with my mental health, as its taken most of the last five years to rebuild it.

Ultimately, I want to feel as ok as possible and as though I am coping and I don’t mind taking tablets to achieve this. I don’t want to come of the tablets for the sake of it, or stay on them for the sake of it, but this period is a useful experiment in seeing where the boundaries are between the tablets and my own mind. I’m surprised it’s so hard to reduce the dose and also surprised that a lot of my old ways of feeling have resurfaced so for now, I’ll tread carefully and think long and hard about whether to drop the dose any further.

Has anyone else experienced similar difficulties? How do you know whether you should come of anti-depressants or not?

 

Dedicated to medicating.

Standard

I’ve had different views towards taking medication over the course of my life. Interestingly, for someone who turned up at the doctor’s surgery at 17 with Depression, I wasn’t offered any sort of chemical relief until I was having a breakdown in my final year of University age 24. This corresponded with an extremely unhelpful consultation I had with a witch-like psychiatrist who I am tempted to name, even though I don’t ordinarily do that for fear of a libel suit. After a ten minute session with witch-features, I came out with a prescription for Prozac and my first sojourn into the world anti-depressants began.

I was hopeful that tablets would help me. At the very least I hoped they would enable me to get to the end of my degree and graduate with my friends.

They did, but Prozac turned me into even more of a nutter than I already was. Within 2 weeks I was having manic phases and rampant insomnia. I couldn’t relax even for a second and had to burn off my restlessness by going for dawn perambulations around the council estates of Huyton. The only good thing that came out of this phase was the sudden completion of my 10,000 word dissertation over the course of one weekend.

After a few more weeks of mental mania I decided I couldn’t cope with the new fast-forward style me and threw the Prozac in the bin. I didn’t attend any further appointments with witch-face as I didn’t trust her to prescribe anything remotely appropriate.

My second adventure in anti-depressant land happened when I was 26. I had moved house and got a different GP; under his recommendation I decided to try a course of Amitryptiline. I was gutted when the same reaction happened and I became restless, agitated and uncontrollably manic within weeks. I was now living by a park, so my restless ramblings were conducted in more picturesque surroundings, but the mental mayhem was the same. Again, these tablets were lashed in the bin.

I was starting to think that medication just wasn’t for me, but a third dalliance with Depression when I was 28 caused me to reconsider. I’d just been diagnosed with Neutropenia (rare blood disorder-see previous posts) and was finding life to be very trying and incomprehensibly shit. After being hospitalised for a week and tested for Leukaemia, HIV, Hepatitis B and C before the diagnosis of Neutropenia was arrived at, I asked to see the hospital shrink as I wasn’t sure there would be any person left to treat if my feelings escalated. I explained all about the bad reactions to Prozac and Amitryptiline and the psychiatrist listened very carefully and deduced that the other 2 practitioners clearly hadn’t listened to how bad my anxiety was. He thought giving those drugs to someone with extreme anxiety was very bad judgement and highly unprofessional. He prescribed a course of Dosulepin, an older tricyclic anti-depressant which had sedative properties.

It took about six weeks to kick in, but it proved to be a very welcome addition to my life. I found the will to carry on living and felt able to deal with all the medical drama. I stayed on it for the next eight years and five of those were the best years of my life.

I decided to come off it in my early thirties. I’d managed to get a secure full-time job and everything was just peachy. I stayed alright for a good few years but then the untimely death of my father once again knocked my brain settings out of whack. For a while I didn’t notice I had deviated so far off my axis. As the slide towards Depression was so gradual, I’d got used to feeling bad and started thinking it was normal to feel absolutely fucking terrible. By the time I arrived at my GP’s surgery a gibbering quivering shadow of my former self, I was so far gone that it took many months for the Dosulepin to re-acquaint itself with my neurotransmitters.

I am still on it to this day. I have fought with many new doctors, psychiatrists and other medical personnel to stay with Dosulepin as it’s apparently not a recommended drug any more. There are newer, ‘better’ anti-depressants on the market with less side-effects. Dosulepin worked so well for me in the past that I don’t see the point of taking the risk of changing. Especially when I have tried and failed to enjoy the company of both Prozac and Amitryptiline.

It’s difficult to question the authority of doctors, especially when you are feeling vulnerable and your head is wrecked with Depression. But doing so got me off two anti-depressants which clearly made me worse. It also helped me to find one which did actually suit me.

I have to attend a medication review every few months with my GP and they still keep suggesting I change to a newer anti-depressant. Recently I was asked to consider coming off anti-depressants altogether but I’m not doing that either. If I had my way I would stay on Dosulepin for life. It clearly fills in the blanks in my brain chemistry and I will deal with the long-term side-effects if and when they arrive.

I’m not someone who has a problem being on medication for Depression. I take injections for my Neutropenia and the principle is exactly the same. Medication isn’t the only thing that made me feel better, but it has made a massive contribution which cannot be underestimated.

Trigger happy.

Standard

If you are suffering from long-term mental health problems, you will probably find that any episode is preceded by some sort of trigger. Identifying your own triggers can be a useful skill in avoiding or minimising the severity of an episode. It can take time to work out what sets you off, or makes you feel worse. But self-awareness can be the most valuable tool at your disposal when managing your condition or dealing with an oncoming crisis.

It’s not selfish to spend time working out what makes you feel bad. It’s taking responsibility for yourself and your mental well-being. Sometimes the triggers may be obvious, or it may seem there is no particular cause for the way you feel. I’ve found that if you look hard you might find triggers so subtle, your mind didn’t acknowledge them at the time.

Therapy can help you work out what triggers your moods and behaviour, but long waiting lists and limited sessions could mean you only scratch the surface. It can only be as successful as the honesty and self-awareness you bring to the sessions anyway. It can be useful to do some self-analysis before your first appointment and have a list of ideas about why you may be feeling the way you do.

Triggers can also change over time. The things that trigger me to feel anxious or depressed now are not the same as when I was younger. I am relatively well at the moment, or ‘sub-clinical’ as the medical profession would say. This has given me an excellent platform to be able to look back over various periods of past depression and anxiety to work out what may have set them off. In doing so, I hope I can learn from them and possibly avoid any severe episodes in future. I don’t see this as ‘dwelling on the past’ or not being able to move on; it’s more of an evaluation of my experiences and self-protection insurance policy.

Everyone will have different triggers, but in the spirit of honesty and sharing, I’m going to list some of mine and show how identifying them has led to me being able to make some drastic positive changes to my life.

The main trigger to my most recent bout of depression and anxiety was my Dad dying suddenly, 5 years ago. Of course, it’s perfectly understandable that this caused me a lot of problems; it was a massive shock to the system and it was normal to be struggling as a result.

What I hadn’t accounted for was the aftershocks and complete inability to function which followed. His death set off a chain reaction of problems and although I sought medical help, I don’t feel that I received the right support. It’s only now, five years away from this that I can look at it rationally and think that all my symptoms seemed to match up with post-traumatic stress disorder. I really wish that one of the millions of doctors I saw at the time had diagnosed this correctly.

The practical upshot of this was that I lost all ability to control my moods and function normally. I was hideously depressed and suffering from severe anxiety and flashbacks, whilst simultaneously trying to keep my job and appear ‘normal’.

Thoughts, situations, people and events which I would normaly be able to deal with were triggering horrendous lows and anxious meltdowns. I was a wreck for years.

I’ve had to learn almost how to ‘re-wire’ my brain so that I could function again and experience some sort of joy out of life.

Part of this was the natural process of getting over my Dad’s death, but most of it was identifying the numerous triggers which were causing the aftershocks and meltdowns. It was difficult, especially when I felt that I was constantly on one of those death-defying rollercoaster rides. The main triggers are listed below:-

1) Anything connected with death. Of course, death is all around us so I’ve had to learn to cope with the idea of death as a part of life. I’ve accepted that I will always be over-sensitive to anything death related and be aware that it is a major trigger. For this reason, I avoid any funerals that it is not strictly necessary for me to attend. I don’t visit my Dad’s grave and I don’t mark the anniversary of his death. I turn over the TV if there are any references to dying or death and I don’t allow myself to ruminate about it. I tell myself that although death is traumatic, I will be able to get through it if anyone else dies because I’ve survived this experience. Really I could do with everyone staying alive for at least 5 years to give me a break from it. People, please try your best!

2) Being tired. Unfortunately, I am tired all the time as I have M.E. I’ve found that this can disturb all my carefully rewired brain settings in an instant. When I’m tired, I have a lot less control over my moods. My brain likes to gravitate towards topics I’d rather not think about. Thoughts, images and feelings come into my head in a random and disjointed way and it makes me feel confused and out of control. There is a level of extreme tiredness that I have only experienced since I got M.E which is similar to feeling drunk. This is a bad and not enjoyable drunk sensation that makes me feel like throwing up. Once it has gone this far, I have about half an hour to get to bed otherwise an extreme anxiety episode will follow that can go on for 12 hours or more. Now I’ve identified the damage that tiredness can cause, I prioritise rest, relaxation and sleep. As soon as my trigger radar picks up progressive tiredness, I act quickly to avoid my moods worsening. If I find myself stuck in the ‘drunk zone’ whilst travelling or in a situation where I can’t go straight to bed, I tell myself that the thoughts, feelings and mood I am experiencing are tiredness related and not a real reflection of how things are.

3) Being asleep. I know this seems crazy because I need a lot of sleep to cope with my M.E and mental health problems as detailed above. But sleep and especially dreaming seem to totally mess with my head. Again, it seems to disturb all the rational re-programming I’ve done in the day and my brain sees it as a chance to go on a frenzied free-for-all. The dreams I have are bizarre, disturbing and downright fucking insane. I had one last week where a man came and removed my brain and cut it into 50 pieces. He laid them all out in rows of 10 and then started eating it, piece by piece. I felt that ‘I’ was in a piece of brain in the back row, but when he ate a chunk, I could feel pain in all the pieces. Luckily my partner heard me making weird noises and woke me up. It makes me so mad that I have to dream shit like this. I don’t watch horror films or anything remotely disturbing. It’s all a product of my own inscrutable head. I thought my brain was supposed to be on MY side? I wish I could dream about kittens and fields of flowers. I deal with this by forcing myself to get up and on with my day. My normal routine seems to rebalance the order of things and I try not to dwell on these stupid night terrors.

3) Feeling alone or lonely. This is a trigger I’ve had all my life, although it has picked up it’s intensity since my Dad died. It’s an interesting one because I do love my own company and need a lot of time to do my own thing. Plus,I have a partner, family and friends I can talk to along with numerous Facebook pals and support groups I belong to. So it’s been tricky getting to the bottom of how and why feeling lonely is a big issue. I think it’s roots are in my teenage years, when due to extreme shyness and lack of social skills, I spent a lot of time in my bedroom. Some of it comes from years of not being able to talk about my depression and anxiety; from feeling like I couldn’t be myself with people or that I had to hide my problems. I think some of it is also due to spending excessive amounts of time at home alone with Neutropenia related illness. I’ve realised that as soon as I start feeling ill, it automatically triggers the lonely feelings because I don’t know how much time I’m going to spend cut off from the world. As soon as I feel a sense of loneliness coming on, I force myself to interact with people. I remind myself of all the support I have around me and I put the TV and computer on if I’m stuck at home ill. Seeing humans on telly and chatting on Facebook is sometimes enough to get me through if I am going through a tough time.

4) Being surrounded by people all the time. I know, I’m a mass of contradictions! This can send me mental just as much as too much me-time. It manifests itself as extreme irritation and claustrophobia. I’m still working on getting the balance right between company and solitude. But I’ve realised there is nothing wrong with taking time out for a solitary walk if on a group holiday, or taking lunch alone if work is busy and frenetic.

5) Being bored. I get bored very easily and it is an absolute recipe for disaster. My mind will instantly wander onto all kinds of unsuitable topics and mental mayhem will ensue. Popular choices include the meaning of life, the nature of reality and why are we here? As I’ve spent most of my life pondering these weighty issues and not arrived at any conclusions, I’m not allowed to think about them anymore. I realised that all the great thinkers, philosophers and scientists had already spent years on these topics and not arrived at any answers, so what’s the point in me wrecking my own head over it all? If I get bored and these thoughts come into my head I tell myself to stop it. I remind myself that life is for living and go and do something less stupid instead.

6) Music and background noise. This one took me a while to pick up on as it is what I’d call a subtle trigger. I realised I can feel suddenly depressed or extremely agitated if there is a moving soundtrack on TV or a sad song playing on the radio or in a cafe. Anything in a minor key can set me off, even if the music is technically beautiful. In the past I loved this kind of music, but post Dad’s death, it triggers extreme mood swings. Ditto any repetitive noise, such as roadworks,traffic, phones ringing and the fan in our bathroom. I can’t avoid all of these things but being aware of their effect is very useful.

7) Changes in routine. I know this may seem an odd one for someone who is easily bored, but I function best these days when everything is more or less the same. I’ve always been a creature of habit but this has now been taken to the next level, like everything else. I think it’s again due to the shock of my Dad going. He was literally here one minute and gone the next. My subconscious has obviously decided that everything now must be more or less predictable to offset this. Work days are now bizarrely, the times when I feel most stable. The whole day follows a set routine and structure wheras being off on holiday, or going away does not. I’m annoyed that it’s now ‘fun’ things that cause me massive problems and mood swings. I used to love being off work and could quite happily mill around for the whole summer break. I still like it, but I’ve learned I have to implement a different routine and can’t float around at leisure. If I let the days go by, I end up feeling lost, disconnected, anxious and adrift. Going on overnight trips or holidays has become fraught with difficulty as the transition brings on severe anxiety. It doesn’t matter how much I’m looking forward to it, I can’t avoid being up all night with anxiety before I go. The first night on arrival is usually fucked too, as I adjust to a new routine. I’d never let it stop me, but it’s a fucking pain in the arse and very debilitating. I tell myself I’ll be fine when I get there and will enjoy it because this is always true. I never want to become one of those people who is ruled by their anxiety. So what if you arrive on holiday or to stay with someone looking a bit mental? It’s better than not arriving at all.

These are the main triggers that I’m dealing with right now. There are more, but I don’t want this post to resemble the length of War and Peace. I’m delighted to find that writing about triggers hasn’t triggered anything nasty, so this is a plus point! Why not have a go at writing a list of your own?

Medication Wars – The Patient Strikes Back.

Standard

I think I’ve made a monumental leap forwards in coping with my mental health issues over the last 5 years. However, during the last 12 months I felt like I kept hitting a brick wall in terms of making further progress. The thing with me is that I am never satisfied with ‘good enough’. I will only stop trying to improve my situation when I feel as though I have the best possible outcome. As far as I could see, the brick wall was the physical health problems I have – Neutropenia and M.E. I don’t think I have truly accepted until recently how utterly depressing and miserable it is to live with them. If the causes of my depression were on a pie chart, these illnesses would account for half the pie.

I knew I was not going to live a happier existence unless one or both of the illnesses was minimised to a smaller sized portion of pie.

In my last blog, I spoke of devising my own treatment regime for Neutropenia, which contradicted advice given to me by doctors. My way proved to be MUCH more successful *smug face*.

For the last 15 years, this has involved taking injections with horrible side effects, so that I can minimise my risk of infection and not die from said infections. I take the injections at weekends because they are so debilitating; if I took them in the week I would not be able to work. The side effects include nausea, vomiting, bone and muscle aches, headaches, exhaustion and an overall feeling similar to having flu.

When I first started to intercept the cyclic pattern of my white blood cell count, I took 3 injections every other weekend which gave it a massive boost. I stayed relatively well, but my weekend was obliterated. It was a less than exemplary situation to work all week, be fucked all weekend, then work all week again. I had to try and do all my chores, see people, maintain my relationship and chip away at my writing goals in the good weekend. I missed out on daylight, exercise, interaction, nights out, hen nights, weddings, christenings, shopping, parties and other events if they were on the injection weekend. I entered a book I was writing into a competition and won a weekend residential writing retreat, but couldn’t go on it as it was an injection weekend. There was no cash prize alternative.

As the years went on, my resentment and bitterness grew. About 5 years ago, I decided I couldn’t be arsed with losing whole weekends any more. I decided to conduct some further experiments with my medication and over the next 6 months managed to get down to 1 injection per weekend. I took it every Sunday and dropped working Mondays as I still felt bad the day after. So I was losing 2 days a week but at least every Saturday was my own. This was slightly better but it has been a bastard if I want to go on a trip, visit anyone or if anyone wants to to visit me. I can’t go away for a whole weekend as I’m ill on the Sunday and it’s a waste. I’m not up to having guests for the weekend because I can’t cope with them when I’m ill on the Sunday.

As bad luck would have it, a lot of my friends and family are not based in my hometown and it’s difficult to see them because of the weekend injection issues. Luckily, I only work in term-time and can see people in the holidays, otherwise I would go properly fucking mental.

I’ve estimated that since I got diagnosed with Neutropenia in 1998, I’ve lost approximately 1,200 days to feeling ill with injection side-effects. Then there are the actual illnesses and infections I’ve had on top. I was going to work out a separate figure for those, but calculating the first sum has broken my heart somewhat.

I’m now at a point where I can’t be arsed losing 2 days a week any more and feel up to another round of experiments and tweaking my medication. My doctors never inform me of any updates or suggest anything new, but thanks to the miracle of the internet and Facebook support groups, I am fully au fait with improvements in the world of Neutropenia.

It seems my U.S Neutropenic friends are able to take the injections I’m on in a very small daily dose, so small that the side effects are greatly reduced. This has been widely recommended and supported by the Severe Chronic Neutropenia International Registry, who are based in Washington, USA and are currently overseeing developments in treatment.

Sadly, these injections are not available in the UK, but that hasn’t stopped me trying to get my paws on this daily dose booty for about a year now.

I’ve been given the knock-back by five different consultants last year, who have refused to even look into it for me. One hinted at costs, but that seemed to be the only factor I could see which was realistically hindering my progress.

I was assigned a new consultant in January this year and finally, I seem to have found someone keen to support and help me with my medication issues. He concurred that there was no daily dose injection in the UK but offered to try and find a smaller dose of a bio-similar medication to the one I am currently taking. By the power of Google he found one in 5 minutes! But, the hospital wasn’t licensed to stock it so he had to put in an appeal to his managers.

Lo and behold, the entire haematology department is not shit and my request was authorised!

On Sunday, I had one of my new injections for the first time and I am glad to be able to share this special moment with you. The dose is approximately a third of my old injection, so I’m taking a risk in reducing my medication. However, all the improvements in treatment that I have achieved thus far were as a result of risk and experimentation.

I’ve still had side effects. But I managed to write a rough draft of this blog and clean the bathroom. This is a first for an injection day!

I’m excited and hopeful.

However, I won’t be stopping until I’ve got the drugs the Americans are on.

How to juggle health problems

Standard

I am laughing at my own title because I’ve made juggling health problems sound like something you can do after reading one blog post. It isn’t easy of course, but over the years I’ve learned a thing or two and I wouldn’t mind sharing some of it with you today.

Life can be a right bugger. As if being predisposed to mental health issues wasn’t enough, my body is also wracked with physical complaints. I was diagnosed with a rare blood disorder called Neutropenia in 1998 and then M.E nearly 2 years ago. Neutropenia is a condition where the numbers of bacteria fighting white blood cells (neutrophils) are very low. This means I am prone to constant infections and I’m unable to fight them off. I have to take injections which boost my neutrophils, otherwise I could end up seriously ill, or dead. The injections have terrible side effects and make me very ill too, but I have no choice other than to take them. The M.E invloves crippling fatigue, aches, pains and ‘brain fog’, where I am unable to think clearly. Lovely. Both are lifelong conditions. I’ve often wondered how far they are all interlinked. The neutropenia was deemed to be idiopathic (without known cause) while the M.E was apparently as a result of contracting swine flu.

I’m sure there are environmental and physiological factors at play which determined my susceptibility to these illnesses, but not one single doctor has taken into account the fact that they both appeared after the two major mental health crises I had in my life.

Without wanting to be over-dramatic, I did think it would be a miracle if I got out of these episodes alive. Lo and behold, here I am, but it seems my body is still bearing the brunt of the shockwaves. It’s proof, if any was needed that the mind/body connection is real and tangible.

If I am feeling bad, which is a lot of the time, it’s not easy to work out which of the issues is causing the problems. If I am physically unwell, I automatically feel down too. But sometimes when I’m down I think that seems to make me more ill. It’s a bit of a chicken and egg situation which is hard to separate.

Sometimes it causes more trouble that it’s worth to try and pick out which illness is causing the problem. Better to just accept that I feel shit and see what I can do about it.

My approach to the problems I face is to always keep trying to improve my situation by whatever means. I’ve made huge advances in controlling my depression and anxiety because I’ve had them the longest and been able to try so many different approaches. Ultimately, if you make it a priority to live the best life possible under your current circumstances it can be very empowering. In my experience, there is always something you can do to improve how you feel. I’ve struggled a lot with the Neutropenia, as it’s a rare condition and doctors haven’t known the best ways to treat it. I’m still chipping away at controlling it because I don’t think I have the best outcome I could have yet. The M.E has been a real kick in the teeth as it seems to follow it’s own rules and I’m still learning to fathom its mysterious ways. I know that as time goes on, I will be more able to decipher its patterns and behaviour.

The main challenge of living with multiple health problems is that no one doctor will oversee the whole of your care. I see separate consultants and specialists for each condition, so until we develop a more holistic healthcare system, I’ve decided to be my own doctor.

Yes, a doctor has studied at medical school, but I can access much of the same information they can through the library and the miracle of the internet. Yes, doctors wear white coats but that does not mean they are clever. It means they are stupid, because it’s very difficult to get blood and guts out of whites. It would be way more practical to wear maroon or navy.

Only I can know how things feel for me and how my health problems are interlinked. Plus, I’ve got more time than they have to research rare blood disorders and think creatively about how to manage them.

Every single improvement I’ve made in living with Neutropenia was as a result of my own intervention and suggestions and NOT because of anything a doctor did for me. I’m sure they are much better at dealing with more common problems, but if I had followed their instructions I would still be in and out of hospital and seriously ill. I took it upon myself to experiment with the timing of my injections and would you believe it, I did a better job than they did. My neutrophil count is cyclic – which means it goes up and down, usually in a 3 week pattern. I was told to take the injections when I started feeling ill, but that was already too late. The decline of neutrophils, along with increasing infection meant that the injection was similar to shutting the stable door after the horse had bolted. Yes, they might have stopped me dying but I had fuck all quality of life. I decided it would be better to intercept the neutrophil count on the way down, before it went too low and an infection appeared. I approximated that this would be every 2 weeks. I suggested to the doctors that maybe 3 injections over 3 days at this point would massively intercept the process and bring my neutrophils back up. It did. Within 3 months I had stopped getting severe infections and could resume my daily activities. My consultant declared that I now knew more about Neutropenia than he did.

It’s a mistake to think doctors know everything and know what’s best for you. In my experience they don’t, and you should be careful about handing over your power to them.

As I see it, we don’t have a choice about what happens to us in life, but we can choose what we do about it.

My health complaints have buggered up my life in so many ways and caused me so much grief. It was a massive effort to think about trying to change anything for the better when I was flat on my back in bed after being fucked over by my mind and body yet again. But if I didn’t, what would be the alternative? I don’t want to be depressed and ill forever and miss out on life. I know there are some conditions which you can’t do much about. I’m certainly not advising that people alter their medication or treatment without carefully looking into it and considering all the options. It’s the mindset of change and improvement I am promoting.

No matter what cross you have to bear, ask yourself honestly – have I done everything I could to realistically improve my situation? Are there other options besides the ones that are right in front of my face? Of course, there comes a point where you have to accept you have done all you can. I know I can’t eradicate my health problems completely. But I can take responsibility for them and not expect the NHS to come up with all the answers.

In next week’s blog – read all about how I challenged doctors AGAIN and got results!!

Diet Coke break and awareness raising.

Standard

I thought it might be time for an interval. I assume it can be quite tiring reading about someone’s nervous breakdown so let’s have a rest. I am having a Diet Coke, which is always my beverage du jour.

I will lighten the mood by telling you about a flash of inspiration I had yesterday. It occured to me that there is not enough recognition of people who struggle with long-term mental or physical health problems. I have four lifelong issues. Depression, anxiety, cyclical neutropenia and M.E. I am a very lucky girl. If you have never heard of cyclical neutropenia, don’t worry. Stick with this blog and you soon will!

I’m not saying I don’t receive support because I do. I just think as a society there should be more ways to acknowledge and recognise people who are surviving the feat of endurance known as long-term health problems.

International awareness days/weeks are a great start. However they only happen once a year and usually focus on more common illnesses. For instance, I was glad to share information about Depression and M.E awareness weeks recently, but there is no neutropenia awareness day because the illness is so rare and uncommon. The cyclic neutropenia which I suffer from affects only 2 in a million people. I am part of an online support group and suggested we try and get an awareness day off the ground, but was told by a fellow member we were already lumped under ‘rare illness awareness day’. I’m currently trying to see if there is any way we can get our own day started up.

Spock from Star Trek  said, “The needs of the many outweigh the needs of the few”. I can see that in the case of more common life threatening illnesses such as cancer and HIV, the needs of the many certainly require attention. But why can’t we recognise the needs of the few AS WELL? Surely there are enough resources and interest around to generate some extra publicity for the unfortunate people suffering in their rarity and quietly managing in silence?

My flash of inspiration involves devising a range of greetings cards to support, honour and empathise with people suffering long-term health problems. There is definitely a gap in the market for this. I know there are the basic ‘Sympathy’ and ‘Thinking of You’ style cards but why is there not a specific range which sums up the dreadful scenarios some people go through in life? Death is more recognised in the card industry than long-term health struggles. It is possible to buy every type of card to support different types of bereavement, including details of family member/step-family member or friend on the front with a helpful verse inside, should you not know what to write yourself. ( Actually, I did note one gap in the market here for death of a pet – which I believe can be just as difficult as losing a person.)

I propose something like the following for starters:

“With deepest sympathy on your diagnosis of a debilitating lifelong disorder”

“My thoughts are with you as you continue your struggle with depression”

“Wishing you love and support with the many health difficulties you face”

I know I would be thrilled to receive a card like this. It isn’t easy to communicate to people that you recognise their long-term struggles, so until the little-known or stigmatised conditions get more awareness days/weeks, why not send a card?

I may write to Hallmark with my idea. Or I might just start making them myself.