Dear all friends… please read if it’s okay…

Dear all friends, this post is a little random and almost nothing to do with the normal topic of this blog. I am very open about the fact I was abused, and no longer feel like I have to explain myself or random behaviours, or that I should be ashamed of what I went through (so much). The support and encouragement I’ve received from so many – close friends to complete strangers – has been absolutely overwhelming and moving, and has helped with my recovery process so much. I do not know how I can repay each of you other than to ensure your compassion was not lost or wasted, and so to keep fighting and keep trying to find a reason to live and keep speaking out. Thank you all for being lifesavers. There have been times where your comments, emails, hugs, smiles, kind words or simply just being there has managed to give me five more minutes of stamina, and then ten, and then an hour, and then a day. Sometimes this is how I get through a day, by looking at a watch and saying survive the next minute. When I reach the deadline of the minute, I give myself another minute to survive. That’s sometimes the only way to work through severe suicidal feelings. Knowing I can look through old emails or comments at any time has been a tremendous help. So thank you…

But what I really wanted to talk about was fibromyalgia, as I realise I sometimes will say to people when they see me wince in pain “oh the fibro is just bad today” and they haven’t the faintest idea what I’m talking about and just nod blankly. Some have asked me if ‘fibro’ is a nickname I’ve given flashbacks, or trauma, or remembered pain…to make the connotations of the name less of an impact. This is a very good idea but to clarify, fibro or fibromyalgia is not me referring to trauma pain or pain from the abuse. It’s something almost completely separate and it’s worsening, so I wanted to write this to all friends so that they may understand more if I mention it in front of them and/or it will prevent me from feeling as ashamed and secretive about it. So I want to talk about it in this blog today, for my own sake, for your education, and for other fibro sufferers as well.

The best website I have found which describes fibromyalgia is this one – http://www.patient.co.uk/health/fibromyalgia

It is a disease/illness. It is not ‘all in my head’, but this is a common myth (that it’s psychosomatic). The cause isn’t really known but there has been some research done which suggests the pain receptors in the brain are over-sensitive and so send more intense pain signals than are necessary. To clarify, this means it’s a biological imbalance in my brain, not me personally being over-sensitive to pain, a whimp, or a hypochondriac.

The biggest symptom of fibromyalgia is pain. Widespread and chronic pain all over the body, and it’s pretty much constant. Sometimes I have flare ups which means the already present pain soars to something near-on unbearable, and can immobilise parts of my body. These flare ups seem to last either hours, days, or weeks. Last week I had a couple of hours of being in absolute agony, and unable to lift my arms above my head or even attempt doing so….which was unhelpful when I was trying to take my t-shirt off and get ready for bed. All under my armpits, across my shoulders and across the front of my chest felt incredibly bruised and almost sunburnt. Fibromyalgia does not affect the joints themselves but often feels like joint pain, or muscular pain. Another large symptom is fatigue – it doesn’t seem to matter anymore for me how many hours sleep I get, I will still wake up feeling exhausted, achey, and very fatigued. During the afternoon I can sometimes reach a point where the fatigue is so severe I cannot concentrate on anything, and so can’t work or study. To me the fatigue is often worse than the pain as it really can just stop me. Due to my past I suffer from nightmares and a strange sleep pattern anyway, so fatigue is not new and some of it is inevitably caused by that….but it has worsened very much so with the fibro.

Fibromyalgia is not curable (but equally is not life-threatening) but it is possible to try and manage the symptoms, and unfortunately the illness seems to be very long-term, if not life-long, and gradually worsens. For some it’s a gradual worsening, and with periods of levelling out, and for others it worsens very quickly. I seemed to be doing relatively okay, with the pain barely noticeable on the whole unless I had a flare up. However, over the last couple of months the illness seems to have worsened quite suddenly, and I am in a lot of pain and very fatigued. I try to put on a brave face and I’m trying very hard to not let it affect my life too much, because if I let it stop me now then there’s no hope for the future. However, the pain is constant and can be unbearable at times. Triggers for flare ups or worse pain for me seem to be stress, cold weather and humid weather, or doing too much. This time of year therefore is an absolute nightmare.

I had a meeting with a doctor last week to discuss pain management and future plans. For now I haven’t been put on any stronger painkillers as we want to see if we can find other, more natural and less dependent methods of managing the symptoms. My doctor was very clear to me that the aim of the game with fibro is not to try and get rid of all pain as the pain just will be constant, but to try and find ways of making living with the pain more manageable, and soothing the pain wherever possible. I can’t help but feel very weak to be discussing pain management. I survived horrific pain for so long and suddenly an illness is leaving me stuck. Rationally I know it’s not weak, it’s just that I’m not dissociating or simultaneously numbed by a strong adrenaline rush. Nonetheless, I do feel weak and low in self-worth, which I realise is far from helpful.

Although the cause of fibro is unknown there is a strong link between abuse victims and fibromyalgia. Some argue this is due to the extreme level of stress that person has lived through, and reasonably the body and immune system will be affected by that stress. Others argue that the result of the body being used as an object, and so brutally hurt and hated, can leave the body itself traumatised and with some therapy this can relieve some of the symptoms. Equally some argue that the level of self-hatred and disconnect from the victim to their body as a result of abuse can mean the negative emotions are channeled into the body and become pain. Another strong argument, which to me makes the most sense, is that a result of severe trauma and pain for a long period of time with abuse can cause the pain receptors in the brain to imbalance, and so the way the brain perceives and responds to pain is damaged due to the abuse. Some argue that the brain is so used to signalling extreme pain that it’s like the brain has learnt that’s ‘normal’ and so continues to signal that level of pain, even when nothing is causing it. All of these arguments seem possible and I fully believe my past is a strong cause of this horrible illness, and I find it very hard not to feel very depressed and upset that what they’ve done to me will affect me physically as well as mentally for a long time, and even when they’re not here I will still be in pain. I feel like they’ve infected every area of my life and upsets me greatly. Fibromyalgia is a very depressing illness, and even though I have been in far worse pain for far greater periods of my life, I was also in an extreme level of danger and on survival mode, rather than living a normal life with less extreme distractions.

The way the fibro is impacting on my life at the moment is that I am constantly tired, leading to me being quite grumpy and depressed, on top of the depression already there due to the abuse itself. I am constantly in pain but don’t feel I can say so, because it’s such a silent illness with no obvious signs. I guess I feel ashamed of it too – that I could withstand such extreme pain all of my life, and yet now an illness is wearing me down and making me miserable. I suffer from a pretty much constant but mild headache, and ache all over. I can no longer walk from my house to campus, and have to sit and plan out my day and anything which involves walking to ensure I will still have energy left to do the stuff needed later (and also to ensure I won’t be in so much pain I can’t function anyway). Equally, I have to make sure there is some walking and exercise because to just stay still – although tempting – will just cause everything to seize up. I guess I also still push myself harder than I should. I refused to let the abusers rob me of my life and fought so hard to get to a point I could live a normal life, and feel bitterness and almost despair that I should finally get here, and be restricted by an illness I have no control over. I know if I ate normally the pain and energy might improve, but the illness on top of everything else just makes me feel so out of control, and I’m so scared of putting weight on anyway, that this is pretty impossible. It’s all just a vicious cycle and I find it hard not to feel powerless, depressed and defeated. I then feel guilty for feeling so miserable about something which isn’t life-threatening or dangerous, when there are people everywhere battling with cancer and other awful and frightening illnesses. This guilt then triggers worse symptoms, feeds the depression and guilt from my past, and so it just keeps going round in one messed up circle.

But I’m doing okay. It makes me miserable but I refuse to let this rule my life. I am starting horse-riding again, because even though I know it’ll hurt like fuck afterwards, I also know it guarantees me a hot bath afterwards which will help me so much in the long run. Most importantly I know it will improve my mental health, even if by just a nudge. Some of the symptoms include things like ‘fibro-fog’  (something I denied to be real until it started affecting me) which basically means it affects my cognition and thoughts; I sometimes get my words all jumbled up which is fairly new to me and is becoming more frequent, and I will sometimes completely forget something very simple – memory blank or fogginess for just a few seconds. Some of this is also a result of the trauma so it’s fairly difficult to tell whether it’s PTSD or fibro, but there is no denying it’s worsened since the fibro. However, fibro also affects my balance, which I hate. I am hoping that starting horse-riding again will not only build my core muscles back up, but also help me regain my sense of balance and so aid my self-worth.

Some people have told me to ‘stop’ but it is honestly the worst thing I could do. As much as I often want to stay at home all day and work from home and just say comfortably on the sofa and moving as little as possible, it will only make it worse, and in the long-run I may end up where I have no choice anyway. Whilst mobility is still very possible (just needing to be planned and thought-out) and whilst I still can do almost everything I would normally do (just with pain and tiredness), I will continue to do so. I won’t stop until I am absolutely forced to. It may well force me to stop doing stuff in the future. If and when I have no choice, I will stop. Whilst I still have a choice, I will live my life as normally as I possibly can do. I need to focus on thinking positively, because when I’m stressed and low the symptoms worsen. I hope that when the weather starts to warm up again, the symptoms will calm down for a while/plateau out.

I think some of it will have come simply from the stress of being in this transition phase of permanent extreme danger and abuse to being fairly safe. As much as getting safer is inevitably better, it is nonetheless incredibly stressful, as any huge life change is.

So please don’t judge me if I seem to be physically struggling, or unable to do things you knew I could do half a year ago. My body was traumatised too, and so some of it is just my body recovering. But mostly I’m just struggling with a silent illness and trying very hard to keep a brave face on and refuse to let this stop me. I’ve fought so hard to get out of a life where I’m hurt all of the time and find it emotionally very difficult to be in a position now where being in physical pain is looking like it’ll be a constant for the foreseeable future. Fibromyalgia varies from person to person so please also don’t compare people if you know others who suffer from this. Just as you have all given me overwhelming support and encouragement for my mental health and recovery from abuse, please also just give me a chance to explain myself if I’m physically struggling, rather than judge. I don’t expect anyone will do but I can’t help but feel nervous and insecure. But I think that comes from my own struggles to come to terms with having fibro, and then my own self-loathing for the fact that I’m struggling to come to terms with it, when I think I should just be grateful it is ‘only’ fibro and not something life-threatening or severely disabling.

I will keep going. I will keep fighting, both with recovery from abuse and speaking out, but also with refusing to let fibro stop me. For as much as I can do, I will try and find humour, I will keep smiling, I will find light in all the places that I can to make sure it’s never all black. I have no intention of wallowing in the pain and fatigue, just as I have no intention of wallowing in the grief and trauma. It restricts me and means I have/will have to alter my lifestyle as the fibro takes its course….but I have no idea how the journey will go. It may be it steadies out for a few years, whether that be 3 or 20 years, and I can continue living as I am doing now for a good while. I can’t tell the future and I won’t let the illness tell the future for me. It restricts me but won’t stop me until I have no choice. And even then it won’t stop me. I will still sing, still smile, still love, still write, and just find pleasure in life in different ways and avenues. Who knows, maybe the restrictions this illness cause may open avenues and doors to areas of life I wouldn’t have otherwise explored, and create new friendships with strangers I wouldn’t have otherwise met….. which is exactly what’s happened with recovering from abuse. Pain and trauma needn’t always be black. There will always be light.

xx

 

 

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8 thoughts on “Dear all friends… please read if it’s okay…

  1. I’m also an abuse survivor living with chronic pain–not fibro, but another chronic illness–and I know how hard it is. It’s even harder when people don’t understand or don’t believe you, I know. But it sounds like you’re doing a lot of positive things to keep a the highest quality of life you can, and that’s great. I know how hard that is, so kudos and good thoughts to you.

    • Thank you, and I’m so sorry to hear what you went through and go through now. It sometimes feels harder to explain than “I was abused” somehow, which is just silly….
      Take good care, and gentle thoughts to you… x

  2. I too know pain, not like yours, mine is chronic due to a weak and degenerating spine, with nerve damage and radiculopathy. So pain is my constant companion too. I am so very sorry you have to endure such pain which I know is not understood, unless by someone else who suffers. God bless you and I pray you have a better night. Hugs.

  3. The difference between the pain of abuse and the pain now is that your fibro symptoms are much more constant. There is no just trying to get through the next few hours or days until there’s a reprieve of some kind. And it is depressing, because it is so out of one’s own control. The helplessness over the illness mimics the helplessness of abuse, though, and that can really be triggering. The things you are doing now are the right things–planning your day out so that you can manage things. Keep at it. You can still have a good life even if it’s never a normal life.

    But it’s really hard to be so young and so sick, because very few people your age can understand those kinds of limitations since they’ve never had them. They take their health for granted because it’s always been there. It is really, really hard.

    I don’t have fibro, but I did have very chronic trauma symptoms that I didn’t recognize–and a lot of fatigue–that I had to be very careful about managing in a similar way to what you do so that I would be able to have some kind of life. Fortunately, for me, it did get better and mostly I feel pretty normal.

    I do really hope that in your case, as the trauma gets resolved a bit, you have fewer fibro symptoms due to the reduced stress. (Because what you are dealing with is enormously, enormously stressful.)

    Torture–which you experienced years of–does lead to permanent health problems. I am so sorry.

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