Fatigue and depression

I’m looking well… When I look in the mirror, a healthy-looking face looks back at me. Friends tell me too. Despite having to wear a very high factor of sun protection when I’m out, I’ve managed to get a healthy glow on my face and arms, even with the lousy summer we’ve had in the UK. My hair has thickened up and I seem to suit the short cropped look I’m wearing.

Medically, my blood counts are almost entirely within the normal ranges. The myeloma is in very good partial remission – the last test they did showed an unquantifiable number of myeloma cells – not complete remission, but pretty damn close. Thursday was Day 120, and today is exactly four months post-transplant. I passed the 100 day mark without any major problems. And yes, in many ways I’m doing quite well. But that isn’t the whole story…

You’ve heard the analogy of the seemingly calm swan madly paddling away under water. I think what’s going on inside me is not dissimilar. On the surface, all looks well, but underneath, on a cellular level, there is a lot happening.

The donor stem cells have been making themselves at home, settling in and creating my new immune system. Not surprisingly, this takes energy which is not always evident, even to me.

On top of this process, side effects of Total Body Irradiation (occurring up to 6 months afterwards) can include fatigue. Macmillan Cancer Support describes some of the effects of fatigue:

  • Difficulty doing the smallest chores – even everyday activities like brushing your hair, showering or cooking can seem impossible
  • A feeling of having no energy – as if you could spend the whole day in bed
  • A feeling of having no strength to do anything
  • Lack of concentration
  • Having trouble thinking, speaking, or making decisions
  • Difficulty remembering things
  • Difficulty sleeping (insomnia)
  • Loss of sex drive
  • Feeling more emotional than usual

And from another source: “Fatigue is characterized by difficulty concentrating, anxiety, a gradual decrease in stamina, difficulty sleeping, increased sensitivity to light and the limiting of social activities once viewed as important.

This is how it has been for me over the past weeks/months. And yet, I can sometimes get on my bike and cycle for several miles or go for an hour’s walk. Admittedly, I need to rest when I get back and am unlikely to be able to do anything else mentally or physically demanding that day.

Whereas the recovery time following an auto transplant is between three and six months, from a donor transplant they say from six to twelve months. I had thought that this was to encompass managing any GvHD, which of course it is, but I hadn’t factored in fatigue or psychological issues.

One of the difficulties is that I forget. I don’t forget that I’m in treatment for cancer or that I’ve had a stem cell transplant. It’s kind of hard to forget when you have to attend clinic every week and take anything from 20 to 27 tablets every day, plus other lotions and potions. Not to mention still having to be cautious about infections – my immune system is like a baby’s, so I don’t have the usual build-up of antibodies that a normal adult would have. But somehow, I forget that I’m not as well as I look on the outside. I have a lot of time on my hands and because I’m not actually ill, I think I need to be doing something useful, productive, contributing to society… and then feel frustrated at not having the mental or physical energy to do it.

On top of all that, or maybe because of it, some weeks ago I sank into a deep depression coupled with crippling anxiety. I suspect it is also in reaction to the uncertainty about the future, plus the ennui of being in treatment almost continuously for 19 months and ongoing.

Some of the symptoms of depression:

  • Feeling of hopelessness
  • Sadness, frequent crying
  • Anxiety or worry
  • Palpitations, panic attacks
  • Withdrawal or isolation from people and social activities
  • Changes in appetite, either loss of appetite or overeating
  • Problems sleeping
  • Feeling tired or without energy

As you can see from the two lists, some of the symptoms overlap. Fatigue and depression easily feed into each other. Everything is connected, so it is confusing trying to work it all out. Maybe I don’t have to work it out, but that’s my way of trying to cope with it. I dare say it probably doesn’t matter, only that it’s a miserable space to be in – feeling low, lethargic, lost, unmotivated, confused, excessively anxious, withdrawn and uncertain.

I find myself questioning if I am tired due to fatigue or depression. Is it a reaction to all I’ve been through or an after-effect of treatment? Are my thinking and decision-making affected by fatigue, depression, anxiety or shattered confidence? Am I not eating, not interested in food, finding things tasting wrong due to depression, after-effects of TBI or gut/mouth GvHD (more on this in another update)? It’s hard to know what’s causing what.

It seems so unfair, like I’ve been tricked… I came out of my “walk in the park” stay in hospital feeling quite well. If you recall, I was painting my bathroom the next day. I expected to gradually improve, gaining energy and an increased sense of well-being week on week, a smooth if gradual upward slope. But after the initial sense of well-being, I began to feel worse, losing energy, feeling tired and overwhelmed by everything, even the simplest of decisions too much to face, feeling shaky and anxious, panicky about quite ordinary activities.

In many ways I’ve found the depression and anxiety harder to cope with than the physical aspects of the last 19 months. Somehow there’s an element of shame and self-doubt, as though I’m just being lazy, or if only I could find the right thing to do, or change my attitude, I could “pull myself together” and get over it. I do know that this is nonsense, but I think it’s the depression speaking, so I keep needing to be reminded and reassured.

The anxiety has been the most debilitating aspect, with thoughts, worries, questions and doubts running round and round in my head, at times totally paralysing. Or waking at night in terror of I don’t know what. To calm myself, all I could do was remind myself of what is real… that I’m alive, that I’m doing well, that I have a nice place to live, good healthcare, state benefits, food, money, family, friends, etc. Sometimes it worked.

I see a counsellor, Jane, at the Haematology unit, who has been very supportive and reassuring. She reminds me that depression is an illness itself and is very common in cancer patients, particularly as treatment comes towards an end. She advises me to be patient and compassionate with myself, to not push myself to do more than I can at the moment, to sit with it and trust that it will pass, which I find almost unbearably difficult. We also talk about small ways I can manage the anxiety and ease the sense of lostness.

One thing I do is to take myself for long walks to get fresh air and movement and to try and tire myself out so I sleep better, which has to be a good thing. Just the simple act of putting one foot in front of the other, despite my head continuing to run its litany of anxieties and fears, usually has a grounding effect.

After feeling unbearably low for a few weeks with no sign of remission, Jane suggested I take anti-depressants to help me manage. I was really not keen to take them, but getting close to desperation four weeks ago, I asked my consultant, Jenny Byrne for her advice. She told me that it is very common for transplant patients to feel as I do, that between a third and a half of their patients suffer depression post-transplant and take anti-depressants with good results. I decided to give in and try them; I went to my GP that same day, who diagnosed me with ‘reactive depression’ and prescribed Fluoxetine (Prozac). On top of all the other tablets I’m taking, what’s one more?

One week, I saw another doctor, Harpreet Kaur, who was very reassuring, both in terms of how well I’m doing medically and in recognising how I’m feeling. She said she would be surprised if I wasn’t feeling as I do at this stage. She also reminded me that it is very early days. Apparently, the whole of the first year post-transplant is “very early days”.

After four weeks of taking the antidepressants, I think they are starting to have an effect. I can now find pleasure in activities, rather than just doing them because they’re good for me or might make me feel better. I can deal with emails and phone calls, so have been able to sort out a few things which needed to be done, which in turn has helped to alleviate some anxiety. I sometimes cook and am eating better. I have a sense of moving forward into a future – albeit uncertain, but not hopeless. I still struggle to get out of bed in the morning, I still need to rest a lot and get frustrated and bored and I often feel sad.

At my worst moments, it all feels unbearable and interminable, but the worst moments are less frequent now. I reassure myself by repeating the mantra of “This will pass.”

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17 Responses to Fatigue and depression

  1. Justina says:

    I want to reply but can’t find anything appropriate to say. My initial reaction was “wow” and I can’t explain that either. You’re one special woman Jet Black! And I’m thinking of you.


  2. Morag says:

    Phew! Sorry to hear you’re having such a hard time. I too was resistant to taking SSRI’s for my fibromyalgia because I’m not depressed, but they have really turned my life around in terms of less IBS and fainting and therefore feeling better with more energy. My GP said that there are a number of illnesses that respond well to SSRI’s even though they’re not depressive illnesses, and the Drs don’t know why. So don’t feel bad about taking them – they have more than one way of helping. As always let us know if we can help in any way, no matter how mundane. Love and kind thoughts, Morag and Alison xx


  3. Your spiritual temperature (so to speak) probably has been spiking with all the changes in your physical being, so if you can connect to a spiritual group that can support you with guided meditations, etc. that might be of some help. Truly depression is both a symptom and a disease and for now, until you can sort out which it is, getting medication to help you through it is a good idea… and by the way, you do NOT have to justify the space you are taking up – LOL!


  4. Lorna says:

    It is so overwhelming to be part of the Myeloma journey. The sense of waiting for the next stage waxes and wanes but like the sea never really disappears completely. I wish there was a magic wand to wave over us all. Take care of yourself. x x x


  5. Enrico Crocetti says:

    What wonderful news! God bless!!!

    Enrico Crocetti

    Please excuse the brevity of this email as it was sent from my cell phone.


  6. Shelley B says:

    Thank you for sharing this. My husband has MM and has really been struggling the last week with feelings of depression and hopelessness. He cries a lot. We did have a very good discussion last night and we cried together. He seems a little better today. I also said to him that it was ok to take some medication to help him. There is no shame in that.


  7. claire says:

    Thank you, once again, for sharing your life journey so openly. xx


  8. Rhiannnon says:

    Jet, Thank you for this. I can identify with so much of what you describe. I, too, feel frustrated and almost guilty at my inactivity (“I should be doing something useful, it’s been months since I finished treatment”) but then I remember what I’ve been through, and remember that the seemingly insignificant steps each day are, in themselves, progress. It’s difficult, but I have to trust that I am moving forward. I get so anxious about the challenge of finding work, considering myself to be “unemployable” after eighteen months of alternating treatment and recovery. Your writing encourages me to keep going, and to feel proud of my achievements rather than inadequate. In communicating your struggles you impart hope and, in turn, inspire us to live true to ourselves, not comparing. You are making a huge contribution by being so honest and taking the time to articulate your experience. Thank you.


  9. Once again I find myself feeling rather jelous of you! Not of your illness, obviously, but the fact that you are receiving some recognition for the after-effects of the illness and the treatment. One of the hardest parts for me in the cancer dance is being contradicted by doctors who are in denial about the impact that the illness, and most especially the treatments which they prescribe, have on one’s quality of life.

    Thank you for the checklists of symptoms and your description of your experience of them, which all sounds incredibly familiar. I am still experiencing serious problems with fatigue and depression 6 years after my diagnosis with breast cancer. But nothing like as debilitating as when they first struck.

    It is very early days for you, Jet; you’re in for the long haul, babe, you know that. Keep up the mantra. It will pass. It may not be the steady, uphill progress you ordered, but in its own way, in its own time, it will pass.


  10. Mavis says:

    Dear Jet

    Sorry you are having this very difficult patch. I guess, as someone who has always been strong you find it hard to be suffering from depression. I found it very hard to come to terms with when I got depressed after I had finished my chemo, when I had had a good response to the treatment. I was helped when my daughter was told, by a GP friend, that it was quite normal for cancer, post chemo patients, to suffer from depression. It sounds as if you have been told something similar and you have been through so much more that I have!
    It is hard for us to be patient and kind to ourselves, isn’t it? Yet, I’m sure, that like me, you have spent lots of your life being strong for others.

    Know that lots of us are rooting for you.

    Love Mavis xxx


  11. thanks for sharing jet, hope you regain your your mental health soon, it’s the pits being depressed on top of everything else, lots of love Pauline xx


    • Kris says:

      Wow I can relate to almost everything you have wrote! I often find myself wondering if this is it. If this as good as its going to get. I’m 48 have had MM for almost 4 years. When is my energy and positive disposition going to return? Some days seem quite “normal” while others have me struggling to do anything productive.
      I guess it is good to know I am not alone. Thanks for your honesty. Hoping the sun shines for all of us.


  12. hi i have missed you on facebook but i read your blog i wish you a good new year and i hope you will soon be feeling stronger and fitter love isabelle your israely cousin if you feel like a holiday in jerusalem you are invited when ever you want


    • SUSAN DUFFY says:

      Isabelle – is that Isabelle Michaels from Southport, Lancashire, England (now of Jerusalem, Israel?)
      Issy – this is Susan Duffy, also from Southport; living in California.
      I don’t mean to cut into this important forum, but when I plugged your name into the internet, Jet’s website popped up. (Hello, Jet from Liverpool – another lovely neighbour.) If this is MY Isabelle – my e-mail: ginjaconsortium@aol.com. Do contact me, it would be lovely to hear from you. SUSAN (a.k.a. Duffofski)


  13. Thank you all for reading and for your comments of recognition and appreciation. It felt quite hard to write this particular update – talking about depression is still quite taboo. So it’s really good to see that it touches a chord with other people.


  14. Pingback: New Treatments For Depression » Blog Archive Treatment For Depression Jerusalem

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