As a caregiver to my daughters I strive to be the best advocate I possibly can, try to remain positive about the future and guide them wherever possible whilst also keeping as much of the control over their lives in their hands and not mine. This can be difficult as when they are really sick they need to pass over the control to me but I am mindful to pass it back when they are well enough to take it on board again.
This picture is a pretty good description of my mantra, what I aim to be and hope I am becoming. It is hard work, although to read it it sounds easy –
- To be a giver is something as a mother you do naturally for most part.
- The giver of love – yes that’s unconditional.
- The giver of good vibes- now that can be a challenge on days when you just want to turn your face to the wall and cry with frustration and anger that this is happening to your children. Trying to be Zen when you feel despair and to throw out good vibes is something I am not always capable of doing but working at and hoping to be able to turn on and give out with practice in the future.
- Giving strength can be draining and exhausting both emotionally and physically but I feel every carer does naturally try to do that at all times…
This past week has had many a bump in the road (more like gigantic potholes to be honest) and I have been struggling to know what course of action would be for the best.
My eldest child, who has struggled for a large portion of her life with social anxiety and then later depression and self harm has once again been going through a dark period. It has held her in it’s grip for the past few years and makes her everyday life in School/College a struggle. We have been under our CAMHS team for several years and they have been doing what they can to help and support her – but it wasn’t until we started seeing the psychiatrist that the situation started to improve. Once the depression was treated with medication – the issue of self harm appeared to have been resolved, or so we thought. Sadly it would appear this is incredibly common amongst modern day teens, which I find shocking and sad. I have included this link for anyone who is experiencing this or knows someone who is, as it may help you work out a way forward;
My eldest had previously been using self harm as a way to release her tension and sadness, the medication took the edge off those feelings and the self harming stopped. Sadly, over the past few months the depression has once again been escalating and so has the anxiety, resulting in a number of severe anxiety attacks. The desire to self harm has come back which has taken all her strength to resist. Unfortunately, the security blanket she crawls under to prevent herself from self harming is to roll a cigarette and smoke. Not ideal I admit – but on balance to smoke a cigarette or cut yourself – which is the worst option?
Understandably, feeling deeply unhappy and anxious along with negative thoughts and lack of love for self has meant her College work has suffered. This was very apparent by her mock AS results – which she found distressing as she is a normally a high achiever and this was unexpected for her. Due to the emotional turmoil she hadn’t been able to concentrate on her studies, nor had the inclination too, neither did she care about life in general or her future, leading at times to some bad choices and behaviour.
However, no matter how much you love someone, how much it hurts to see them self-destruct, you cannot do anything to help until they admit there is something wrong and will accept your help. Thankfully, my daughter did see that something wasn’t right, she was confused, upset and frightened by how she felt and the way her life was going. Then – she did the bravest thing possible – she mustered all the strength she could and came and asked for help. I am so thankful that she has and so proud of her for realising that she didn’t have to try and fight her demons by herself, she has a family and friends who love her and will support her and stand alongside her to fight those demons together.
We have spoken to the College and Psychiatrist and have meetings with both to work together in providing a structured treatment & education plan. This includes dropping one of her four A’levels with immediate effect. The College have assigned a tutor to be her “go to” person along with support during exams and a place to go when feeling anxious to have space to calm down, have a drink and take time out.
Her treatment for depression and anxiety is ongoing – there is no quick fix, but she is showing strength and determination to fight her demons and we will be there beside her and help her through this however long it takes. I have huge admiration for her as she won’t give up, she is learning how to work towards a happier, healthier self and uses meditation to calm her mind and soul. She has started a blog to help rant and vent about issues she finds important to her which helps prevent her bottling up her emotions which I support wholeheartedly too, even though I don’t always agree with some of her rants/discussions;
My other two daughters also continue to suffer many a bad day due to their ME, it causes horrific fatigue – post exertional malaise (PEM), described by http://www.cfids.org/ as being;
“Muscle wilting meltdown, air gulping short of oxygen feeling, brain blood vessels flayed on a laundry line in the wind, metal rods in the back of head . . . someone crushing your ribcage, limbs giving out, mesh bag constricting head, ‘pingers’: those first small headaches that warn of bigger headaches, ‘back of head clamp’ headache, increased gravity feeling, being pushed backward into bed, temple-to-temple headache, weak arms as if bound down by stretchy ropes, eyes and brain blanking with a kind of pulse through the head . . .”
This week they both started their home tuition, which has been a big step forward for them towards the road back into education. Tasha is still very much in the acute phase which means she is only able to manage very short bite-size amounts of tuition before she is exhausted – literally 5 minutes is all she is managing initially. For Tara, who has now improving very slowly, her initial tuition session is between 30-60 minutes.
But with ME this seemingly small step to those on the outside is a mammoth one for them and inevitably causes a degree of PEM. This will continue until their bodies adjust to the new activity and settles down. This means any additional activity has to be minimised during this period of adjustment – it’s a case of taking baby steps not big leaps.
Education is a challenge too due to brain fog issues – which is a common symptom for ME sufferers. It means that they can only start off doing very short stints of school work with their tutor and build up their tolerance very gradually, over a period of weeks or months, it is explained by Dr Myhil as;
- Poor short term memory
- Difficulty learning new things
- Poor mental stamina and concentration – there may be difficulty reading a book or following a film story or following a line of argument.
- Difficulty finding the right word.
- Thinking one word, but saying another.
The knock-on effect of this also means that they can’t see as much of their friends, mess about on the computer, or use their energies in anything that will further drain their resources. Instead they will need to take rest periods between activities and try to pace as best as they can. In the past our efforts have failed and the education has had to be discontinued due to the severe PEM it caused and so this time round we are being cautious.
I stress this because ME is a serious and very disabling illness that is not taken seriously as yet by a vast swathe of the population who have been fed misinformation about it being a psychological attentions seeking illness of the lazy!! Also, because it is an “invisible illness” where sufferers don’t always outwardly look sick so they aren’t always believed.
As you can appreciate, when you live with this illness, seeing this reaction from others makes my blood boil, as why on earth would anyone, let alone a child, pretend to be ill and restrict their life so enormously, lose friends, miss out on education and so on? It is a physiological illness and yes of course there are psychological implications which develop due to devastating impact it has on what was previously a healthy, active, normal life. We have utilised the advice and support of the TYMES (The Young ME Sufferers) Trust and would say for anyone with children diagnosed with ME that I can highly recommend you log onto the website. It’s full of advice, publications and support for your child and they also have a volunteer run helpline you can call (leave an answer-phone message if no-one answers, they do call back). It is headed by Jane Colby (an ex-headteacher) who is a huge campaigner for children with ME. http://www.tymestrust.org/
Another great source of information is Invest in ME (http://www.investinme.org/), who are active in funding biomedical research into ME and also provide a wealth of information – they have produced a great leaflet that can be downloaded and printed off to pass on to raise awareness in the general public to help fight this ignorance about the illness.
In it it defines that ..
ME is a severely debilitating neurological illness.
It has distinct: onset; symptoms; causes; responses; and, long and short term prognoses.
ME is an acquired illness with multi system involvement which is characterized by post encephalitic damage to the brain, brain stem and the Central Nervous System (CNS).
Reaction to physical and mental activity and sensory input is unique to ME.
Over-exertion can make ME worse and the effects are often delayed and may not be seen within 24 hours.
Symptoms can range from mild to severe to life-threatening and can include:
● Cardiac and Cardiovascular Problems
● Cognitive Dysfunction
● Gastro-intestinal Problems
● Hormonal Imbalance
● Immunological Problems
● Muscle Weakness and Intense Pain
● Neurological Problems
● Sleep Problem
So folks I suppose amongst all my ramblings what I am trying to share with you is that our life is tricky, there are many, many battles we have to face on a regular basis. We take two steps forward and one step back – BUT it’s got to be better than one step forward and two steps back – no?
I am on a mission to share our experiences, raise awareness wherever possible and hope that if enough of us do, eventually we will gain the recognition and support so desperately needed. Never underestimate the power of many, eventually we will be heard.
So I take on board that life is hard for us as a family, some days so bleak it’s hard to remember any joy or laughter ever existed within these walls – but then I shake myself down and remind myself that no matter how hard life is, how little light you can see from your end of the tunnel – there will be better days ahead, I believe vehemently that there will and that there will be treatments and with a uniform recognised biomedical approach for sufferers in the future.
I saw this little note somewhere on the internet and loved it – try to hold onto the good and great days – for they will come again…